Plan for the future of the state-administered resource centers : as required by HB2184.

              Oklahoma Department of Human ServicesPlan for the Future of the State-Administered Resource Centers
As Required by HB 2184
The purpose of this plan is to establish guidelines for future care of the current residents and the operations at the Northern (NORCE) and Southern (SORC) Oklahoma Resource Centers that resolve the uncertainty of maintaining an aging physical plant. The plan does not include the Robert M. Greer Center in Enid.
I. The Current Situation
A. Current Facility Structure.
1. Legal and contractual structure.
The Developmental Disabilities Services Division (DDSD) of the Oklahoma Department of Human Services (OKDHS) operates both centers under contract with the Oklahoma Health Care Authority (OHCA) as Public Intermediate Care Facilities for Persons with Mental Retardation (ICF/MR).
2. Licensing Required.
As a condition of Medicaid participation and funding, both centers must meet the survey and certification requirements of Medicaid ICF/MR regulations and Oklahoma’s Nursing Home Care Act. The Department of Health annually surveys each center to ensure, 1) that care and treatment of the residents meets standards, and, 2) that the physical plants of both facilities meet life safety codes and requirements, as amended from time to time.
3. Condition of the Physical Structures of the Facilities.
While the centers have consistently met the Medicaid care and treatment requirements, meeting life safety codes has sometimes proven to be problematic. Some of the problems include:

Some residential buildings at SORC create safety risks because they contain half walls between living spaces that do not meet standards of preventing smoke penetration in the event of fire.

Residential buildings at both facilities do not uniformly meet the requirements for installation of sprinkler systems mandated by August 13, 2013.

Almost all of the buildings at SORC and NORCE are connected to a sewage system with aging lines that will require almost $3 million to replace on each campus.

Water lines need to be replaced which are estimated to cost $1.5 million dollars on each campus

Fire alarms and current models of PA systems associated with the fire alarms are estimated to cost more than a million dollars to replace on each campus
1
Collectively it is estimated that it will cost more than $30 million dollars to repair or replace the nearly imminent capital needs. A survey of the needs of persons with developmental disabilities not presently receiving services indicates that neither they nor their families would choose a public facility placement.

The aging physical plants have exceeded their expected useful life.
B. History of the state-operated facilities.
SORC began operation in 1907 as the State Training School for White Boys while NORCE began in 1909 as the Oklahoma Institution for the Feeble Minded. In 1963 both facilities were transferred to the Department of Public Welfare from the Department of Mental Health. At the time of the transfer, there were 2,298 individuals living at the two facilities. The combined census has steadily declined over the years and now totals approximately 242 individuals. During this time span the Hissom Memorial Center was built (1965) and closed (1994.) The last major construction at SORC was the multi-use Damron Building in 1989. The Robert M. Greer Center was constructed on the campus at NORCE in 1989. Two new 8-bed living units were opened on the NORCE campus in 2011 as a result of legislation creating the Office of Public Guardian in 2004. The campuses of both facilities contain 76 buildings, of which 14 are residential sites. Only four of the 14 are under 50 years old.
C. Physical Plant Liabilities at NORCE and SORC.
Appendix 2 identifies $34 million dollars in needed capital repairs, renovations, and improvements at both facilities, which is a reduced estimate based on the current combined census of 242 residents.
Under Medicaid’s reimbursement rules, the capital costs listed in Appendix 2 would have to be funded with 100% state dollars. Medicaid reimbursement would be obtained by amortizing the capital costs over 40 years in the centers’ daily rate for care and treatment of the residents. Unlike other Medicaid long-term care programs, the ICF/MR and the Nursing Facility programs permit residential and room and board costs to be folded into the daily rate. For the state of Oklahoma this means that the state assumes the responsibility for maintenance and improvement of the physical plant. With aging facilities, the financial burden of the public ICF/MR facility costs far outweighs the advantage of being able to include room and board in the payment rate.
Because of the declining physical condition of the centers as well as increasing code requirements, every annual survey brings with it a renewed threat of de-certification from Medicaid funding. In the recent past this has resulted in residents being moved to other buildings in better
2repair. These administrative actions have in turn caused distress to families and guardians who see relocation as an indicator that the state does not care about their loved ones. However, the loss of Medicaid funding, which relocations seek to avoid, would generate even greater turmoil. The Department would be required to identify state dollars to cover the $545 daily resident rate while trying to create alternative placements for the entire census in a very compressed time frame. Currently, federal dollars fund 65% of the rate.
D. Input of Families, Guardians, and Staff.
Appendix 1 is the report of the input from family members, guardians and staff from meetings conducted during September 2011. Discussion of the future of the facilities is an emotional, fear-filled issue for many people. It is clear people are satisfied with the services provided at the resource centers. Even though facility-based care is not “best practice” in the field of developmental disabilities, the services at NORCE and SORC have passionate supporters who do not wish to see things change. The major wish of the people who attended the sessions was for the State to keep both facilities open and to return them to the way they used to be. Failing that, advocates want alternative services to be of equal quality.
E. Current Developmental Disabilities Services Environment.
The State of Oklahoma is not able to return the resource centers to the way they used to be without investing millions of dollars in bricks, mortar, infrastructure, and staff. These are dollars that are needed to assist the 6,400 person request list for Medicaid community-based services. When the facilities achieved Medicaid participation in the facility-based ICF/MR Program in 1971, there were no community services. Beginning with the approval of Medicaid Home and Community-Based Waivers in 1981, public facility services nationally have declined from 131,000 (1980) to 34,000 (2009.)
In Oklahoma, the number has declined from 1802 (1982) to the current 242 residents. During the same period, recipients of Medicaid Home and Community-Based Services in Oklahoma have grown from 0 (1982) to 5,150 (2011.) The national trend has been away from large state operated ICF/MR facilities.
II. Alternative Visions of the Future for the Resource Centers and their Residents
A. Quality Residential Alternatives.
The DDSD presently serves over 5,000 persons in the ICF/MR Home and Community-Based Waiver program who receive comparable services but pay their own room and board costs with Supplemental Security Income (SSI) or a combination of SSI and earned income. Many live with their families, but many live
3independently and have roommates to help share expenses. Unlike the Resource Centers that are dependent on appropriated dollars to do capital repairs, should the homes of service recipients fall into disrepair, the recipients/tenants can move to a better home if the landlord is unresponsive.
B. Considerations for the plans for the resource centers.
The plan being proposed attempts to be sensitive to the concerns of families, guardians, and staff while gradually converting service delivery to a home and community-based model. The inescapable factor in the discussion of the future is the age and condition of the respective facilities. It is not service delivery that threatens the Medicaid funding of the resource centers but the state of the physical plant. Every dollar spent on capital repair and maintenance (even capitalized dollars that must be amortized) is a dollar that is not available for the delivery of service since little or no capital costs are spent on community placements. One of the goals of the Medicaid ICF/MR program is to ensure health, safety, and quality of life. Achieving that goal is increasingly problematic at older facilities dependent on state funding for maintenance of the physical plants.
C. The guidelines for maintaining the resource centers.
Some investment in the Resource Centers will be necessary to simply sustain minimal operations. The following guidelines are proposed to give clarity to distinguishing when spending funds for routine maintenance is justified and when substantial major maintenance expenditures might be urgent, but are not justified because they are simply extending the useful life of a part of the facility’s function (e.g. water and sewer lines) and the expenditure is not justified by the absence of a useful life for the facility in general.
1.
DDSD will fund repairs totaling less than $15,000 per occurrence to occupied buildings on the campuses of NORCE and SORC.
2.
DDSD will repair damage to occupied buildings from external causes, e.g., wind, hail, as long as damage does not exceed one-fourth the current value of the building.
3.
DHS/DDSD will not incur capital costs for facility upgrades or
infrastructure repair, i.e. the items listed in Appendix 2.
4.
Use of residential buildings not meeting code will be discontinued by August 13, 2013, the deadline date for compliance with new regulations for sprinkling.
5.
Residential buildings lacking in privacy and/or suitable living or space for programs will be phased out over time.
6.
Unused buildings will be razed as funds permit and surplus property (real and personal) will be identified and liquidated.
4D. Future Residential Arrangements.
While the relocation of some residents is necessary because of significant capital costs, this plan presents all residents with the opportunity to move to a safe, modern and affordable home. Some residents may not choose to take advantage of this opportunity. For a few, retaining their residence at SORC or NORCE will be possible on a limited basis subject to the diminishing useful life of the facility.
III. Future Residential Alternatives
A. Individualized plans in community placements.
More than 5,000 DDSD recipients have individualized plans in community placements. Appendix 3 is a summary of the home and community-based placement process and an outline of the kinds of services available in different residential and community living arrangements. Appendix 4 is a description of the safety and quality of the community services outlined in Appendix 3. Health care assurances, background checks for staff, adequacy of staff training and a host of other arrangements to promote the health and safety of each recipient is detailed in Appendix 4. The description of the safety arrangements made for community placements and the arrangements to retain quality in the service for community placements are addressed during planning for relocation and continue after placement. Because placement decisions are individualized and based on each recipient's specific needs, the plan calls for a gradual conversion of services from being facility-based to being community-based.
B. Specialized Homes.
A resident may choose to move into the home of a person who is selected by the resident and is properly trained to provide services on an ongoing basis. A resident might choose to move into the home of a staff member who chose to open their residence to a new family member. Such an arrangement provides a special opportunity for some staff and residents to continue their relationship.
C. Medical Support Homes.
Residents who need substantial amounts of nursing care may choose to live in a home with two to three other residents who have similar medical needs. The homes are staffed by residential provider agencies with both nursing and direct care staff. Some nursing staff and direct care staff and some residents may choose to form a Medical Support Home with a provider which would create an employment opportunity for both and would take advantage of the staff’s familiarity with the resident’s medical needs by keeping their existing care relationships.
D. Comprehensive Support Homes.
For residents who choose to move to community placements with other residents who presently reside at the facility or who desire existing staff at the facility to stay with them as they
5transition from the facility to the community, DDSD will use their best efforts to continue the existing relationships of residents and staff into a turnkey placement herein referenced as a Comprehensive Support Home. While individual plans will be required for each resident, maintaining the relationships that currently exist between residents will be a priority for those residents who chose to move together to a community placement.
Some families may be unable to participate in the planning process (e.g. out of state, poor health or otherwise unavailable) for an individualized community placement. Where appropriate, DDSD in cooperation with team members who know the resident and persons familiar with community alternatives may arrange an appropriate placement with all necessary services provided.
E. Placement at SORC or NORCE.
A limited number of residents who reside in buildings that meet the August 13, 2013 safety standards and who choose to stay at SORC or NORCE may do so. Those persons are identified in the chart below based on the current census and the proposed census as of August 13, 2013, at each residential building named below.
Projected Census at Resource Centers as of August 13, 2013
Unit
Current Census
Proposed Census
SORC:
Turner (Hospital) (1951)
15
15
Junior (1960)
19
0
Multi-Unit North (1974)/South (1961)
83
0
Independence (1960)
4
0
Deacon I (1951)
3
0
Deacon II (1950)
3
0
NORCE:
Cherokee (Hospital)(1948)
43
43
Delaware Group Home (1951)
9
9
Alpha (1950)
5
5
Beta (1951) (3 from Greer Home)
4
4
Omega House (1971) (20 from SORC)
0
20
Cherokee Circle (2010)
16
16
Rose (Chickasaw) (1951)
39
0
GREER:
Greer Group Home (1949)
3
0
Total:
245
112
6IV. Process for Moving to Future Residential Alternatives
Residents who volunteer to move or persons who must move because their building is being closed will receive intensive assistance to help them find an appropriate residence as outlined in Appendix 3.
A.
Priority moves will be given to volunteers or persons who are roommates who desire to be placed together. Three to four residences need to be opened monthly beginning in April, 2012.
B.
If there are persons at SORC who must move because their building is being closed, but do not desire a community placement and want to take advantage of the opportunity to move to NORCE to reside in Omega House, up to 20 persons will be selected based on the first date of admission at SORC. Compatibility of the residents will be a consideration in the decision as will suitability of meeting their needs at the NORCE facility.
C.
The following incentives will be given to persons who volunteer to move to a community placement or who must move because their building is being closed:
1.
Community transition funds of up to $2,400 per person to be spent on furnishings such as appliances, furniture, household goods, security and utility deposits, moving expenses, and safety items such as smoke detectors, anti-scald devices, and first aid kits.
2.
A one-time supplemental property replacement fund of up to $850 will be allowed for each person transitioning to be spent to replace property once during the first 36 months following their transition.
V. Transitions for Employees
A. Time of Transition.
To implement this plan will require 17 and one-half months (from March 1, 2012 to August 13, 2013). To reduce the combined census from 242 to 112 in that timeframe will require community placements for 130 persons at an average of eight to ten persons moving per month. These movements are in addition to any intra or inter-campus moves.
B. Staff Moves to Specialized Homes, Medical Support Homes, and Comprehensive Support Homes.
Matching existing direct care staff and nursing staff with providers and the residents with whom they have a strong relationship will be given priority. Further, the wishes of residents who have strong relationships with other residents and who wish to move together will be honored. In almost all of these cases a community placement will need to be developed. Any placements to Home and Community-Based Waiver services that are four persons or less will
7qualify for an improved Medicaid reimbursement rate for one year under the Money Follows the Person (MFP) initiative. To encourage PERMANENT NON-PROBATIONARY STAFF and residents to develop these kinds of placements and to maintain their existing care relationships, the following incentives will be given on substantially the following terms and conditions:
1. Specialized Homes.
For permanent non-probationary staff who (a) volunteer to resign their state employment AND (b) complete all of the conditions of establishing a specialized home with a community provider for a current resident of SORC or NORCE and (c)have the home established on or before December 31, 2012 and (d) sustain the home until at least June 30, 2013 or for at least six months after employment;
2. Medical Support Homes (Nursing and Direct Care Staff) and Comprehensive Support Homes (Direct Care Staff).
For permanent and non-probationary staff who (a) volunteer to resign their state employment AND (b) are employed by a community provider to care for a current resident of SORC or NORCE and (c) the employment is initiated on or before December 31, 2012 and (d) is retained until at least June 30, 2013 or for at least six months after employment.
3. Retained Community Provider Employment Incentive Payment.
The six month minimum post-departure employment requirement means that the staff must maintain employment with the community provider for at least six months from the date of hire with the community provider. It is acknowledged that the provider may terminate the staff for such cause as the employer determines to be appropriate. Nothing in this proposal changes the employment at will principle for the community provider’s employment of the staff. If employed for six months or more with the community provider, the staff shall be eligible for a lump sum payment due within 30 days of completing the six month retained employment date. The lump sum payment amount shall be the greater of the following:
a.
$5,000.00; or
b.
amount of money computed by multiplying the employee’s final annual salary times a percentage based on the years of services stated below:
i.
25 years or more: 25%
ii.
20 years to 25 years: 20%
iii.
15 years to 20 years: 15%
iv.
10 years to 15 years 10%
v.
5 years to 10 years: 5%
vi.
up to 5 years: 3%
4. Initial Community Provider Employment Incentive Payment.
Regardless whether the staff retain employment with the community provider for six months or more, if the employment
8relationships described above are initiated, the employee shall be entitled upon employment with the community provider a lump sum payment equal to 18 months of the amount of the monthly employee-only health insurance plan for the year in which the employee voluntarily separates from state employment. This is the same health insurance payment for which provision has been made in previous Voluntary-Out Benefit Offers.
C. Other Staff Employment Opportunities.
1. Other Medical Staff Opportunities.
Efforts will be made to connect existing medical personnel at SORC with available opportunities in Pauls Valley and surrounding areas with special effort to connect staff with the South Central Medical and Resource Center, a Federally Qualified Health Center (FQHC) in Lindsey, Oklahoma. At NORCE, there will be a reduction of 39 residents, but a gain of 20 new residents. Thus, a reduction in medical staff at NORCE should not be significant.
2. Reassignment of some Quality Assurance, Case Management, Training, and Office of Client Advocacy Staff.
Some state employees who presently perform quality assurance activities or client advocacy services at SORC or NORCE could be reassigned to perform similar activities for persons who receive community-based services. Similarly, some state employees who perform training activities or case management could be reassigned to perform similar activities for persons who receive community based services.
VI. Administrative Consolidation at SORC
Personnel processing, business claims, timekeeping, and contracting will likely be consolidated from SORC to the DDSD area office, state office or NORCE as appropriate. Few, if any, of these jobs will transfer. Since the SORC operations will be smaller, these administrative functions will be reassigned to best meet the Division’s business needs. Maintenance of food service as the census declines will be analyzed to determine the most cost effective option. The operation of Red Bud vocational services at SORC will be phased out as the census declines and former residents receive vocational services from community-based providers. Day treatment on Turner will continue to be provided on site by SORC personnel. SORC will continue to require an administrator who is a licensed nursing home administrator.
The plan calls for continued operations of SORC at Turner alone after August 13, 2013. However since the campus will then be down to 15 residents, future consideration should be given to whether the remaining 15 residents could move to NORCE based on a number of criteria (availability of space in the Hospital Unit, duplicate cost of maintaining certification at two sites, duplicate administrative costs not previously consolidated, etc.).
9VII.Advantages of the Plan
Although this plan does not fit any one person’s preferred result, a number of goals were weighed in developing the plan, including the following:
A.
Virtually all new construction and capital costs associated with the continued operations of the two campuses will be avoided.
B.
Parents and staff expressed strong support for facility-based services on both campuses. The plan initially preserves both campuses with the possibility of consolidation if ultimately determined to be the most viable option. The plan preserves a modest facility-based delivery model for some current residents.
C.
Employees prefer their employment with the State. Some staff will move to other employment opportunities, preferably in the community service system with residents with whom they have strong relationships. Some will remain public employees, most prominently at NORCE. At some point, private operations of the public ICF-MR campus (as exists at the Greer Center) or a sale of the operations to permit the operation of a private ICF-MR could be considered. However, the immediate plans are to continue the operations as described herein as a public ICF-MR with agency staff.
D.
The plan recognizes the prevailing belief that community integrated housing and employment offer better outcomes and quality of life for persons with developmental disabilities
E.
The plans for future operations will be more clear thus ending some of the ambiguities and uncertainty that currently exist about the future.
VIII.Disadvantages of the Plan
A.
The plan does not totally eliminate the State’s responsibility to maintain buildings and infrastructure.
B.
The plan does not maintain campus operations as they presently exist or restore them to the levels that existed in the past as some parents and guardians desired.
C.
Some state employee jobs are preserved, which to those persons who desire privatization of the facilities may be a more costly option.
10Report on the Recommendations and Concerns of the Families and Guardians of Residents as well as the Affected Employees of the Southern Oklahoma Resource Center (SORC) and the Northern Oklahoma Resource Center (NORCE) as Required by HB 2184
Presented to:
Department of Human Services (DHS) Developmental Disabilities Services Division (DDSD) 2400 N. Lincoln Blvd. Oklahoma City, OK 73105
Prepared by:
Brian R. Lensink 2431 E. Goldenrod Street Phoenix, AZ 85048
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Index
Index 2 Verbatim Feedback Suggestions and Concerns from SORC and NORCE Parents/Guardians and Affected Staff
Introduction 3
Process 5
Family Representation 6
Recommendations and Concerns of Families, Guardians and Affected Staff 7
Conclusion 13
Appendix 1
SORC Family Input Session 1 17
SORC Family Input Session 2 25
SORC Staff Input Session 1 27
SORC Staff Input Session 2 30
NORCE Family Input Session 1 31
NORCE Staff Input Session 1 35
NORCE Staff Input Session 1 41
NORCE Family Input Session 1 52
DHS/DDSD Input Session 55
2Introduction
The State of Oklahoma, like most states in America, is struggling with a situation in which old institutional facilities are due for major repair or replacement at the same time that the State is working its way through major financial and economic problems. Simultaneously, the service delivery system continues to evolve as one that favors integrated community living, close to peoples home communities, over segregated institutional living centralized to only a few, mostly rural, locations in the State. Even if financial issues were of little concern, how can one justify making large capital improvements to facilities that will not be used after the current residents have passed on? Families of younger people who have similar disabilities find the new community service system where services are provided in the home or closer to home more to their liking. Like all major changes in our society the process is difficult and fraught with complex political decisions that need to be made in the context of an environment of high emotion displayed by a truly concerned and passionate group of reasonable citizens who don’t really want anything to change for their loved ones.
Many years ago, states made a commitment, either actual or implied, to their citizens to care for those individuals with severe disabilities and built large institutional settings, generally in smaller towns in rural areas of most states. In Oklahoma those facilities were located in Pauls Valley, Enid, and Sand Springs. Starting in the late 1800s to early 1900s these large facilities were operated with little state resources. Once the capital costs were covered they were generally self-supporting. Many of the people who were sent to live in these facilities had mild cognitive disabilities or may had been labeled as “delinquent” or “incorrigible” and there were no services available in the rural and agricultural communities across this country. At that time the pubic schools had no programs for children with disabilities and no services to support families.
When the state stepped in to provide services, facilities quickly filled. Because so many people with mild disabilities lived at the facilities, resident labor was used to keep costs down and the residents busy. Often the residents of the facilities tended the farm, which was a part of practically every state operated institution. They raised their own cattle, pigs, and chickens as well as grew vegetable gardens, collected eggs and tended to apple orchards. The residents with more mild disabilities also performed maintenance, did the cleaning, laundry and housekeeping and many were even used as staff aides tending to the needs of those residents with more severe disabilities. The residents were rarely paid or paid very little as this work was considered their contribution to the costs of care and housing. Often the state made only minimal financial contributions to facility operations once the facilities were established. Those days have passed and are unlikely to ever return.
This all started to change during World Wars I & II when many of the people with mild disabilities were conscripted into the armed services. As a result, the facilities’ labor force went through dramatic change and the residents of these facilities tended toward having more severe disabilities. Another major shift took place with the establishment of the National Association for Retarded Children in the late 1950’s. Families advocated for services closer to home and for their children to attend school with non-handicapped children, and be more a part of their family and community. They wanted the public schools to step up and educate their children. Families were a strong and vocal force and were successful in getting “educable” classes and then “trainable “classes as they were called during the 1960’s and early 1970’s but still there was no education for children who had profound disabilities.
This too changed in 1978 with the passage of Public Law 94-142, requiring the public schools to provide an education for all children with disabilities. These same parents wanted their communities to provide local homes, day programs and workshops for children who missed out on a public education and were now young adults, living at home and with no services.
With the push by families of young adults at home, the community services initiative gained momentum rapidly in the 1980s. Every state started to develop workshops, day programs, group homes and other services in the community. Quickly these services flourished, initially serving people with mild disabilities but continuously becoming more capable of serving people with profound disabilities with medical,
3physical and behavioral support needs. The development of community services was fostered by a major push toward deinstitutionalization due to poor conditions. Along with this growth in community services was the establishment of private profit and non-profit service providers who wanted to be a part of this local development.
Starting in the late 1970‘s and early 1980‘s large state institutions were going through very difficult times. Their populations had grown exorbitantly and overcrowding was a major problem. Conditions were grim, costs had skyrocketed, facilities often didn’t have sufficient staff, buildings were aging and outmoded and repair and replacement expenses were high. These conditions led to a decade or two of litigation calling for improvements and movement toward the new, smaller, more integrated community settings that were beginning to thrive.
Concomitantly, there was a philosophical shift taking place both economically and politically. Where state operated institutions were seen as good for local, rural economic development initiatives in the 1950’s and 60’, this view became a politically unfavorable alternative and states could not sustain the expenses of remodeling, replacement and operations. Higher staffing levels and new federal quality standards for large facilities were required in order for states to obtain federal matching funds to help with the cost. These issues were aggravated by uncertainty as to whether these facilities would be used in the future. Increased financial pressure and the uncertainty of the future caused states to cut back even further on capital improvements. This caused further deterioration to take place and to this day, there are many old and abandoned institutional buildings throughout the country and many states find it difficult to even pay for their removal.
In the late 1970s and early 1980s the legal system rigorously pushed for improvements in the system and assisted people to move to the new, more integrated community systems of care. Class action lawsuits calling for the “right to treatment in the least restrictive environment” were being filed across America. Most states were involved in this type of litigation.
The Oklahoma class action lawsuit, know as Homeward Bound vs. Hissom Memorial Center, was started in 1985 and went to trial 1987. After the trial was complete, Judge James Ellison issued his Opinion and Order on July 24, 1987. The Judge stated,
“This trial Court, sitting in Oklahoma in 1987, upon consideration of the overwhelming evidence . . . must conclude that constitutional federal and statutory requirements now dictate removal of the institution as a choice of living environment of such individuals.”
This was the ruling that came down in state after state. These landmark decisions provided even further pressure on the states to develop community service systems capable of providing appropriate services and supports for people of all levels of disability. Initially, people were served at home or close to home in a small, integrated residential program with public school sponsored programs, day activity centers, vocational training programs, and supported employment initiatives. These programs and services have been expanded in recent years with new avenues for individuals with disabilities to obtain inclusion, make contributions to their communities, obtain meaningful work and get involved in new shared living opportunities.
Now, in 2011, the process of change continues in Oklahoma. The environment however, is much different. Today severe economic pressures make new financial commitments even more difficult. Further, the community services system is more mature and able to accommodate the needs of almost all people with intellectual and developmental disabilities. At the same time, the facilities at the Resource Centers are run down, lack privacy, and are in need of major repairs (12 to 16 million on the Capital Improvement Request for SORC alone) or replacement and active families are expressing their concerns and want neither a change in operation nor discontinuation of the Resource Centers. Families prefer the status quo or they want the building updated, improved or replaced and staff position that have been lost over the past couple of years to be restored.
4Through the passage of HB 2184 the Oklahoma Legislature has directed the Department of Human Services (DHS) and its Developmental Disabilities Services Division (DDSD), to develop a plan that contains targeted dates to change or discontinue the operation of state-administered resource centers. Below is the full text of that legislation:
HB 2184
A. The Department of Human Services shall develop a plan which contains targeted dates to change or discontinue the operation of state-administered resource centers. In developing the plan, the Department shall consult with the families and guardians of the residents as well as affected employees of the resource centers, and shall take into consideration the recommendations and concerns of the families and guardians of the residents and affected employees.
B. The plan shall be submitted no later than January 1, 2012. The plan shall be subject to disapproval by the Legislature on or before March 1, 2012. The plan shall not be implemented until after March 1, 2012.
Process
In an effort to obtain the recommendations and identify the concerns of the families and guardians of residents, as well as the affected employees, the Department of Human Services, Developmental Disabilities Services Division (DHS/DDSD) asked this facilitator to hold a number of input sessions and to develop a report that accurately reflected both the recommendations and the concerns of families, guardians and staff.
In order to obtain the input required in HB 2184, two (2) input sessions for family members and guardians and two (2) separate input sessions for affected staff were held at each of the two Resource Centers. One family/guardian meeting was scheduled at the Resource Center and one in Oklahoma City, where the largest number of people who have loved ones at each of the Resource Centers reside. The input sessions for affected staff were held at the Resource Centers. An additional session was held in Oklahoma City for the DDSD central office, the Resource Center directors and DHS facilities management staff. The schedule of these meetings is provided below.
Sunday, September 18, 2011
Family Input Session – SORC Family Input Session – SORC in Oklahoma City
Monday, September 19, 2011
Staff Input Session – SORC Staff Input Session – SORC
Sunday, September 25, 2011
Family Input Session – NORCE
Monday, September 26, 2011
Staff Input Session – NORCE Staff Input Session – NORCE Family Input Session – NORCE in Oklahoma City
Tuesday, September 27, 2011
Central Office and Facilities Management Staff Input Session – Oklahoma City
These Input Sessions were designed to obtain the most information possible from the participants and used a “compression plan” approach. In compression planning input is obtained from a group of 20 to 30
5people by focusing on key questions pertaining to the issue to be explored. In order to fulfill the intent of HB 2184 the questions used to focus the input included:
Family Input Questions
1.
Question 1 - What suggestions or ideas do you have about how the resource centers could be changed or what changes do you think might be helpful for the future?
2.
Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of the state-administered resource centers or expanding alternative services to take their place?
3.
Question 3 - What could DHS/DDSD do to make any changes to or discontinuation of the resource centers easier for the people who live at the centers and their families (i.e. planning processes, visits to community programs, written information etc)?
Staff Input Questions
1.
Question 1 - What suggestions or ideas do you have in regard to changes in the operation of state-administered resource centers?
2.
Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of state-administered resource centers or the expansion of alternative services?
3.
Question 3 - What could DHS/DDSD do to make the changes to or discontinuation of the resource centers easier for the staff working at these locations?
Along with these input sessions a copy of the questions was sent to families/guardians and given to staff prior to the input sessions. Families and affected staff were encouraged to write down their feedback for the sessions. To increase the opportunity for involvement and input families were also encouraged to send their feedback directly to the facilitator using a special email address established for this process or by sending a letter. Approximately 28 emails and 10 letters were received and made a part of the input referenced in this report.
These input avenues gave family, guardian and staff participants an opportunity to provide recommendations and express their concerns regarding changes to or discontinuation of the Resource Centers for consideration by DHS/DDSD in developing the plan in response to HB 2184. There was considerable emotion expressed during these meetings. In an effort to represent that emotion quotations are provided throughout this report. Each person’s quotation is a verbatim presentation of that person’s written comment either from the cards collected at the input meetings or from emails or letters received. Specific names of families, guardians and residents are not used to protect privacy.
All recommendations and/or comments received are presented in their original form in Appendix 1. Although an effort was made to keep duplicate input to a minimum many comments or ideas were provided by a number of participants and/or presented at several sessions.
Family Representation
The state-administered resource centers referred to in HB 2184 include the Southern Oklahoma Resource Center (SORC) in Pauls Valley, Oklahoma, where 125 individuals currently reside, and the Northern Oklahoma Resource Center (NORCE) in Enid, Oklahoma, where 117 individuals reside.
The input sessions for each of the Resource Centers were well attended and letters and emails further increased the numbers of families able to provide their thoughts, recommendations and concerns. Of the 125 people residing at SORC approximately 38% were represented. Of the 117 people residing at
6NORCE approximately 43% were represented. The reason the word “approximately” is used to qualify the numbers is due to incomplete information on the sign-in sheets. Everyone who signed in was to identify who their relative was at the Resource Center. Many of the people who signed in did not identify their relative or just said “sister” or “brother” so the resident cannot be identified. Therefore, each of the individuals was counted as representing an additional resident that may cause a slightly overstated representation of Resource Center residents.
Family Input Sessions
Approximate # of people attending an input session or sending a letter or email
Approximate # of Residents represented
Family Input Session – SORC
67
47 (of the 117 Residents)
Family Input Session – NORCE
75
50 (of the 125 Residents)
It should be noted that some guardians no longer live in the State of Oklahoma. Approximately 30 residents of NORCE and 20 residents of SORC have guardians who live out of the state. Four of the in-put letters were received from out of state guardians. In addition, the Director at NORCE is the appointed Guardian ad Litem (GAL) for approximately 12 residents at that facility. The Director at SORC does not serve as the GAL for any of the residents currently on the SORC campus. When the number of residents without in-state guardians and the number who are represented by the GAL are subtracted from the total resident population there was a 76% representation by NORCE in-state families and a 56% representation by SORC in-state families. This is considered a high level of participation.
Affected staff at the two Resource Centers were also included in the input process. There were 36 staff represented at the SORC input sessions and 35 staff represented at the NORCE input sessions. The staff came well prepared with comments, recommendations and concerns, many of which were typed out ahead of the meeting which made the collection of their recommendations easy. There was also a State Employees Association representative present who attended all staff input sessions for both NORCE and SORC as a non-participant observer of the sessions. In addition, a local legislator attended the Staff input session at SORC. Another, but different legislator attended the two meetings for SORC families in Pauls Valley and Oklahoma City. Both legislators were non-participant observers. The staff that came to the sessions represented a good cross section of positions and included direct care, maintenance, custodial, food service, vocational, administrative, psychology, nursing, quality assurance human resources, case management, and customer service representatives.
Recommendations and Concerns of Families, Guardians and Affected Staff
The majority of families who attended the input sessions wanted to be sure to have their overriding suggestion or concern highlighted, and that recommendation was:
Do not discontinue SORC or NORCE!
It was very difficult for families and guardians to get past this overriding and clearly stated primary suggestion. Most of the concerns and suggestions focused on building up the Resource Centers as the direction for change. Concerns regarding the discontinuation of the Resource Centers were primary while suggestions on alternative services were less prevalent. It seemed that families felt as though talking about alternative services would be a self-fulfilling endeavor and the families and guardians were therefore reluctant to engage in that discussion.
Family Quotation
“There is nothing that can be done to make it easier for families and guardians to have their loved one or relative discontinue living at SORC. Many clients have been living at the SORC Regional Center for well over 50 years and call this place home. We the parents and guardians must be the voices for our loved ones and relatives, as they cannot speak for themselves. It would be traumatic to uproot clients as they possibly could not endure the move and they feel safe where they are.
7Appendix 1 in this report is a verbatim presentation of all comments made at the input sessions. The families were very concerned and wanted everything that was presented to be in the report so that is what has been done. The Appendix makes up 42 pages of this 58-page report.
It is important, however, to organize the input in a format that can be more easily used by DHS/DDSD in developing the plan. Therefore, the input from families, guardians and affected staff has been sorted into eight (8) themes that surfaced across both facilities and at all sessions. Those themes are presented below with some of the key recommendations and concerns following each theme.
Theme One - Don’t close or change the Resource Centers – we want SORC and NORCE to stay open.
1.
I do not want the large state institutions to be closed.
2.
SORC and NORCE should remain open to provide homes for clients that are hard to place and to provide a home and haven for the clients that are on the waiting list or the ones that need a home when the state shuts down private facilities for violations. I oppose the question of discontinuation of the Resource Centers.
3.
I would like DHS to stop their plans to close the Resources Centers.
4.
DHS/DDSD can propose a timeline to make improvements to the Resource Centers, NOT to discontinue anything for these disabled members of society, THIS WILL NOT GO AWAY.
5.
Bad idea. Legislature should disapprove of this part of the plan. Since we do not want NORCE to close my suggestion is to keep it open. We have some of the best doctors and nurses and workers that take very good care of the clients here.
6.
NORCE has been open 100 years. It is a very good place for the clients, it is their home and they do not like change, they do not do well with change.
7.
My brother has been a resident at Enid since he was 5 and he is currently 48. He is safe, has a job. It seems relocating him would be disruptive to his “normal life”. Moving into a group home would reduce security. My family prefers that he stay at Enid.
8.
NORCE has the best staff ever! to take care of the kids. They are the most caring people. The kids should stay there -no privatization.
9.
My son has been in Enid 44 years. We did bring him home once a month until he was unhappy so now I go see him and he is very happy and likes all the noise - he has musical therapy - they have big parties even though he’s blind, He likes the kids.
Staff Member Quotation
With a fully staffed, OT, PT Speech and even dental services, we could offer services to our residents aswell as several individuals outsidethe facility. So many would benefitfrom the services, possibly evennon-developmentally disabled. Wecould then function as a true Resource Center.
Theme Two - Change the Resource Centers by making improvements to current building, building new homes on campus and bringing back the staff that have been reduced over the past several years.
1.
Bring the buildings up to code.
2.
Add sprinkler systems where needed.
83.
Build new, smaller homes on the grounds of SORC and NORCE.
4.
Make the facilities at SORC and NORCE more efficient so they are more cost efficient using solar panels, wind turbines and improved infrastructure.
5.
Use Department of Corrections inmates as a labor force for the Resource Centers in the areas of maintenance, food services and grounds care in particular.
6.
Hire back the staff that has been lost including OT, PT, speech, recreation, hearing services and wheel chair/adaptive equipment repair.
7.
Have the Resource Centers provide respite care for people with disabilities who live in the surrounding communities.
8.
Open enrollment to new clients from the community waiting list, people without developmental disabilities who have medical needs and other disability groups.
9.
Improve the transportation fleet by replacing vehicles with over 100,000 miles and use golf carts for moving people around the campus.
10.
Use SORC and NORCE as a community center and resource for the surrounding community.
11.
Fix up the empty buildings on campus for community residents. Reopen the pool and give access to all people here on campus and in the community. Open our lake and develop with cabins for resident’s families.
12.
State leaders should implement the plan of building smaller home-style buildings on the SORC campus. State leaders and DHS should make a commitment for the continued operation of SORC and also stop depriving new clients from a waiting list from being placed at SORC. All lost positions should be brought back to SORC.
13.
Change is needed and the state administration show more support by allowing us to use the monies that are returned at the end of each fiscal year for use to hire more professionals, build more energy efficient housing and replenish our very depleted vehicle fleet.
14.
I think that smaller, more cost effective home-like buildings should be built to replace the existing buildings that do not meet the building codes.
Staff Member Quotation
As a direct care worker this isn’t just a job, to us this isour family as we are theirs. We love them as our own.
Family Quotation
It is necessary for physical therapy,music therapy, occupational therapy and hydrotherapy to be reinstated aswell as all other entertainment providedby SORC. The doors to the ResourceCenter should be opened and accept those clients on the waiting list. The more clients are accepted into SORC and NORC the more cost effective they become. Allow SORC to utilize the oil and gas royalties. Bring existingbuildings up to code and build newbuildings.”
Theme Three - Return to the time when the Resource Centers were self-supporting.
1.
Re-establish the mechanics shop so the Resource Centers can maintain their own vehicles and not send them to dealers or local repair shops.
2.
Develop an onsite farm, dairy, vegetable gardens and other self-sufficiency agricultural opportunities to reduce the costs in those areas and provide involvement opportunities for the residents.
3.
Hold a “farmers market” to sell produce grown at the centers.
4.
Establish a farmers market. Expand greenhouse, plant north field with tall crops, i.e. corn, okra, and also potatoes and green beans. Put 4 or 5 garden plots on the willow side with assorted squash,
9cucumbers, onions sweet potatoes, etc. This opens up a lot of opportunities for clients such as social skills, money skills, and nutritional facts. Also a sense of pride and accomplishment.
5.
Bring back self-sufficiency, laundry, mechanics, grounds people etc.
Theme Four - Make the Resource Centers true “resource centers” for the State of Oklahoma.
1.
SORC and NORCE could become state diagnostic centers and provide specialty medical services.
2.
Fully implement original plan for SORC to be RESOURCE CENTERS for all clients in need including those who reside in the community.
3.
OK DHS should let SORC be the resource center as it was intended to be by rehiring therapy positions, so that SORC could serve our clients and other individuals in the community.
4.
SORC needs to be a true resource center open to people who need the level of care and supervision offered at SORC and new admissions allowed for short and long-term care.
5.
NORCE needs to be kept open. Combine NORCE and SORC, update some at NORCE and KEEP NORCE. Get more workers and caretakers.
6.
Staff Development and Nurses could educate and instruct group home staff, caregivers, and families to better equip them to care for their clients.
Theme Five -There should be one Resource Center in Oklahoma where the services would be consolidated for this population.
1.
Combine SORC and NORCE to be a single, more cost efficient, Resource Center.
2.
Build a new resource center in a central location near the Oklahoma Health Sciences Center.
3.
Consolidate Centers to one location – maybe a facility with wings rather than different buildings.
4.
Combine the two facilities and use resources from both to serve the clients, providing the same services now provided at NORCE and SORC.
5.
NORCE needs to be kept open. Combine NORCE and SORC, update some at NORCE and KEEP NORCE. Get more workers and caretakers.
6.
Establish a training center for the community where we provide training and services for the community. We expand our training services and provide health services for the community.
7.
Consolidate Centers to one location – maybe a facility with wings rather than different buildings.
8.
I think the best way to change would be to combine the two Resource Centers.
9.
One facility is necessary and it needs to be improved if possible. Please look at the option of keeping at least one facility open and improve it to take care of this population of special needs people.
10.
Combine the facilities into one of the two current locations or move to a different facility that would be more central and to improve efficiencies. This would help eliminate costs by reducing or eliminating duplication of services.
10Theme Six - Establish other streams of income to support the Resource Centers.
1.
Lease or sell excess land and use these funds and money from the oil/gas leases to improve and operate SORC and NORCE.
2.
Return the funds allocated to the Resource Centers that has been returned to the DHS general fund in the past few years and use those funds to improve the Resource Centers. People seemed to think that has been about $13 Million over the past several years.
3.
Develop fund raising activities to help support the improvements and operating expenses of the Resource Centers such as:
a.
Sell crafts made by the residents.
b.
Get paid for providing services to people with disabilities from the community who are utilizing the services and programs provided by the Resource Centers, particularly the vocational and day activities services.
c.
Establish a foundation for the solicitation and collection of donations to support the Resource Centers.
d.
Bring back bake sales to earn money.
4.
Get paid for the vocational and day services that are being provided to people from the community.
Theme Seven - Fully meet the US Supreme Court Olmstead decision by offering a full choice of services to families including NORCE and SORC and other ICF/MR settings.
1.
“We choose SORC and NORCE”.
2.
DDSD needs to continue to involve family in the transition process and honor their choices as the Olmstead decision allows including ICF/MR placement (at SORC and NORCE) especially when behavioral issues or medical issues make community placement difficult or unlikely.
3.
I oppose the discontinuing of the Resource Center. I support the Parent/Guardians choice and the Resource Centers should be maintained as an option.
Family Quotation
“These citizens are not “portable” justbecause they are disabled. Home, familiar neighbors, and trusted caregivers are justas important to these human beings as it isto any of us. They are not “things” whodon’t care or are unaffected by the content of their lives, Forcing over 100 citizens to move after living in their current home for the last 40-50 years is not only cruel but unconstitutional.”
Theme Eight - When developing alternative services for people at SORC or NORCE they must be equal to or better than those that are provided at the Resource Center.
1.
Make sure (guarantee) that the community will provide all services that exist at the Resource Centers and that the needs of every client will be equally or more fully met in the community as they once were fully met at the Resource Center.
2.
Guarantee that the oversight that currently exists in the resource centers, including inspections, monitoring of medications, safety, abuse and injury prevention, etc. will be equivalent in the community settings.
3.
Guarantee that the level of medical care is maintained fully in community programs. This includes rapid access to 24-hour medical care within 10 minutes of notification, as they receive now at SORC.
114.
Assure the residents receive the same level of oversight and supervision in alternative community settings as currently exists in state resource centers.
5.
Guarantee the same level of medical care including the proper administration of medication, specialists, physicians, dentists and eye doctors as needed to meet all needs.
6.
Assure that the state takes full responsibity for any incident(s), death, or injury to clients that may occur because of misconduct or negligence because of the states failure to provide a full range of services that included the choice of a large institutional setting. This includes the compensation of the client or the parent/guardian in the case of death, for pain and suffering.
7.
Assure that clients will not be beaten, raped, bullied, robbed, starved, abused or neglected in any community setting.
8.
Assure that client will be protected from predators in the community including rapists, thieves, drug dealers and other persons who are a threat to their safety and well being.
9.
Assure there are no errors in medications.
10.
Allow for the establishment of an oversight committee, established by the parent/guardians of current clients, has full access to any and all community settings that current SORC and NORCE clients are moved to. Access will include inspections without notice.
11.
There should be 24-hour video surveillance throughout the community residential settings in which clients will be placed, including bedroom, bathroom, entrances and exits. Provide means for parents, siblings and guardians to access 24 hour video surveillance including the provision of computer equipment should they not have that ability.
12.
Guarantee that community homes will be located within 1 mile of the residence or work place of the court appointed guardian.
13.
Provide tours to facilities so families can see homes and programs that serve people who have the same needs as their loved one.
14.
Ensure that families are fully informed of planning sessions that will be held to discuss or plan for alternative residential placement.
15.
Provide families/guardians with written information about community agencies where their loved one may be placed, including state reports and audits.
16.
Planning for alternative services should last a full year after a recommendation so guardians are able to make unlimited visitations to proposed placements.
17.
The State should require full background checks of both operators and employees of community programs including criminal background checks.
18.
We need 24/7 supervision; an individual that is trustworthy and caring of my family member is required. Safe facility, trained provider, doctor, case manager. NOT A NURSING HOME.
19.
No nursing homes – inappropriate care. Don’t use any nursing home placements!
20.
I need all medical equipment and other items necessary for his total care at home.
21.
I would like my sibling to receive the same monies and services that the Hissom clients received.
Family Quotation
The primary concern is that in a group home the client will be put in a bean bag chair and left while the “caregiver” watches wheel offortune. Solve this fear and theproblem gets easier to solve.
1222.
We would like to look at group homes in OK so we can see for ourselves.
23.
SORC, NORCE and Area office staff should work as a team to provide a full range of services to benefit residents at SORC and in the community.
24.
What happens to the staff that have been here for 20-30 years and taken care of these clients?
25.
I would like to see the community services that serve the medically complex person.
26.
If transition hat to happen, let the familiar staff go with the client to help ease them into change.
27.
State must provide 24/7 medical services for the clients because it is very difficult to get appropriate medical care in the community.
28.
Include and educate guardians on benefits of placement in a community setting. Educate resource center staff so that they understand the benefits of living in the community.
29.
Guarantee that if community placements don’t work out, they will have an alternative.
30.
Let families meet providers. Provide training and support for families and providers.
31.
Ensure community providers are providing all services for each individual.
32.
Ensure adequate transportation/vehicles are available.
33.
Use accredited state owned group homes with NORCE providing the staff and services.
Conclusion
The primary and most often made recommendation of families is to focus on Theme 1, continuing the operation of the Resource Centers at Pauls Valley and Enid.
The secondary recommendation is to improve the Resource Centers by renovating or replacing old buildings, increasing the staffing at the facilities and improving transportation safety with a new or upgraded fleet of vehicles. Further, the families do not want the lives of their loved ones interrupted by a move to an alternative program. They feel that the Resource Center has been their home for many years (40 to 50 years for some residents) and that a move would be harmful. Many feel that their loved ones would receive services that would be inferior to the care currently provided by the Resource Centers. Fear is the strongest emotion that drives many of the recommendations and concerns of these families and guardians. These fears include:
•
Fear of the unknown.
•
Fear for safety of their loved ones.
•
Fear of inferior services that don’t meet the needs of their loved ones.
•
Fear that medical services will not be available.
•
Fear that oversight of community services will be lax.
•
Fear that loved ones will not be accepted by the community.
•
Fear that the staff will not be of the same quality as they have today.
These feelings of fear are reinforced by hearing about a couple of “bad experiences” that a few families have had in the past and a lack of knowledge regarding “positive stories” that also exist but have not been heard. It takes many positive stories to outweigh a couple of bad experiences and that educational effort has not yet occurred. All of the recommendations for improvement and expansion of the Resource Centers follow the recommendations made in Theme 2.
In the search for a rationale to maintain the Resource Centers it is quite normal for people to want to go “back in time” and reestablish the Resource Centers as the vital facilities of the past when they were the primary and often the only service model available to this population. Those days are gone and like so
13many other aspects of life “time marches on”. The world is considerably different today from what it was one hundred years ago, fifty years ago, or even at the turn of the century just eleven years ago.
Although the Theme 3, “going back to how it once was” carries considerable nostalgia it does not seem to be practical given today’s circumstances. Farming has become a big business and often a corporate business with large capital equipment requirements in order to be economically viable. The people served by the Resource Centers are largely characterized as having significant disabilities and physical support needs. This is not the workforce that could be called on today to make the facility more cost effective. The buildings that currently exist were built in the 1950s to 1970s and no longer meet the living standards that most people or funding agencies would find satisfactory. The infrastructure is even older than the buildings as many of the basic infrastructure elements date back to well before the oldest buildings currently used on the grounds.
The affected staff at the resource centers also would like the Resource Centers to continue operation and their recommendations focused on alternative means to increase the number of people served by the Resource Centers, how their skills could be used in serving expanded or new populations and on the wellbeing of the people they currently serve. One of the strongest recommendations of the staff follows Theme 4, to make the Resource Centers a true “resource center” for their geographic areas where they can provide the professional/medical services and open the doors of the facility to the community as a recreation center, medical services center, respite care center, diagnostic center and general backup resource that might increase the utilization of their services and expertise.
Theme 5, the recommendations around consolidating the two Resource Centers at one location was mentioned several times by families and staff. There seems to be a general sense that maintaining two Resource Centers, performing the same basic functions, is probably inefficient, costly and unsustainable. The difficult aspect of this recommendation is to determine where the consolidation should take place. Basically, those from SORC spoke as though it would be at SORC and those from NORCE felt it should be at NORCE. Each felt that they had the better facility for this purpose. Some chose a neutral, central location often mentioning the Health Sciences Center where there would be a hub of medical activity.
Establishing alternative streams of income, captured in Theme 6, is an important consideration for DHS/DDSD. However, the magnitude of the financial challenges faced over the next few years will likely be larger than the size of any recommended revenue increases suggested during the input sessions. From this facilitator’s experiences in other states, the revenue from the sale of craft products and contracts in the workshop was generally only sufficient to pay for the materials used in those programs. Often staff produces the actual product with assistance by the resident. The activity involved in making crafts or on the vocational side, shredding paper, is used more for its habilitation value than economic value. The value in making craft items or shredding paper is seen more as providing meaningful activity for residents and as a vehicle for training and socialization. These activities are critically important to the mission of the Resource Centers but not a viable means of financial support.
The utilization of revenue derived from mineral or oil rights on Resource Center property is a policy matter for the Oklahoma Legislature. Though a source of revenue it is likely inconsistent in nature, fluctuating with the price of gasoline and the ups and downs of the oil industry. Rental or sale of Resource Center property is similarly a legislative policy matter. Again, there is revenue potential but the quantity and consistency of that revenue stream would need to be evaluated.
Setting up a foundation is also a good idea but one that takes time and energy to implement and manage Solicitation for funds is difficult these days with everyone under the sun asking the citizenry for dollars to make up for lost revenue of other, often public, sources. This would be an excellent activity for the Parents and Guardians Association (PGA) to undertake and probably quite complicated for the State of Oklahoma to implement. Again, this is an important alternative to consider but is less likely to provide a regular stream of income that can be used to sustain the operations of SORC and NORCE.
14Theme 7 focuses on the US Supreme Court Olmstead decision. This is a complex legal issue decision that has been used both to assist people in obtaining the opportunity to have integrated services in the community and as the basis for a “right to choose” protection position for parents and guardians. There are many unanswered questions surrounding this landmark decision. States and courts are grappling with the question of whether a family’s “right to choose” can force a state to continue the operation of a program that it has deemed to be cost inefficient and outmoded as a service delivery approach. It is often seen as the “right to choose” between available ICF/MR options and not a right to preservation of an option that a state no longer believes it can sustain. The facilitator’s role was not to provide legal guidance or analysis and as in other states, there seems to be tension between alternative beliefs and this tension will probably get resolved in the courts.
A number of families wanted the opportunity to look at alternative services to those at the Resource Centers and many recommendations were made about community alternatives to the Resource Centers. This led to Theme 8 that focuses on recommendations pertaining to alternative services. Many of these recommendations were in the form of desired “guarantees” pertaining to community-based alternatives. Though it is difficult, and probably impossible, to have 100% guarantees, even within the context of the Resource Centers, they are an excellent indication of what is of critical importance to families. It will be important to deal with these desired guarantees in the development of a plan.
It was obvious that most families had not had experience with nor did they fully understand what has been made available in the community over the past several years. Some of the terminology that is used to describe services in the community has been narrowly interpreted by families who have had their loved ones in the Resource Centers most of their lives. A term such as “group home” is narrowly interpreted as a home in the community for people with mild disabilities who are provided with minimal supervision. There is no picture in their mind of a group home that is set up and operated specifically to meet the needs of physically involved and medically challenged individuals. One where nursing services are available at all times and adequate equipment and space is provided to meet the needs of the population. The fact that residences labeled as “group homes” cover a broad array of residential types is not readily understood and there is a fair level of disbelief that is really true. This represents a lack of knowledge and experience, although normal for people who have not needed to focus on these alternatives up to this time, and can be mitigated with information and positive experiences.
All the recommendations within these eight (8) themes are valid and well meaning. They came from families who care deeply about their loved ones. They also came from affected staff who care about the people they serve and also value their own skills and abilities in working with this group of people who have severe disabilities and considerable care needs.
Both the families and affected staff come to the table with a great sense of fear. Fear is defined as:
A distressing emotion aroused by impending danger, evil, pain, etc., whether the threat is real or imagined; the feeling or condition of being afraid; something that causes feelings of dread or apprehension; a feeling of disquiet or apprehension.
When you are afraid or fearful you tend to move to a protective mode of thinking and acting. It will be important to address those issues that are creating fear in a straightforward and empathetic manner. Families are fearful for their loved ones, staff are fearful about the future of the people they work to support and their own employment future.
These fears must be addressed in the plan that is developed in response to HB 2184. There are many options available in addressing the fears that are driving considerable opposition as well as the needs of people with disabilities, families, affected staff and the State of Oklahoma. The families and staff have identified a broad range of ideas which are worthy of consideration and can be used to find an acceptable way forward in implementing needed changes at the Resource Centers in Oklahoma. Accepting these as valid recommendations, worthy of full consideration, and then using them in a flexible and innovative manner can help move the system forward.
15I will end with a quotation from an elderly Oklahoma native sitting in the front row during one of the family feedback sessions who, at the conclusion of the sessions, said:
Family Quotation
“This is America. I believe in the American way and that our system of government will do the right thing for these citizens, whatever that may end up to be.”
16Appendix 1
Verbatim Feedback Suggestions and Concerns from SORC and NORCE Parents/Guardians and Affected Staff
17SORC Family Input Session 1 Question 1 - What suggestions or ideas do you have about how the resource centers could be changed or what changes you think might be helpful for the future?
•
Improve current building if possible
•
The most pressing suggestion is to build new homes at this facility for its clients. Much has been neglected here for at least 10 or 15 years. If discontinuing the center of the center takes place I feel adequate group homes should also be found for the clients.
•
Improve the SORC facility and continue its operation.
•
Provide housing on the SORC campus for medical personnel.
•
One Large building built near OU Health Sciences to which all current SORC clients will be located.
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Return the money that has been taken away in the past few years to bring the residential and other activity buildings up to standard.
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Provide support and funding for community activities for clients.
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Expand services and residential options to non-MR clients with medical needs such as Alzheimer’s that demand similar levels of care of the current medically fragile SORC clients.
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Allow community residents with needs for specialized programs and services to have access to those services through SORC.
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Bring SORC back to levels of physical, music, and occupational therapy that fully meet client’s needs.
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Expand services at SORC to include physical rehabilitation residential treatment for non-MR clients.
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Investigate alternative energy resources such as solar panels and wind turbines.
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Keep the resource center open because the cost of care for equivalent care and services at the resource centers is the same, or in some cases, is even less than in the community.
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Include the resource centers as an equal choice with alternative services and fully fund the resource centers for that choice.
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Provide more support and training for SORC staff.
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Golf carts to transport clients.
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Modify and improve campus facilities for energy efficiency.
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All physical labor contracts should be provided by the Departments of Corrections including landscaping, lawn care and maintenance.
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Actively support and market products made by SORC clients as a business opportunity and revenue source for clients as well as an opportunity to actively engage in the community.
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Fully meet the Olmsted US Supreme Court decision, which calls for offering choice of a full range of services that include large institutional settings and ICF/MRs.
18•
Insure the state will include large institutional settings and ICF/MRs, such as SORC, as a choice for residency that is included in the range of services pursuant to the Olmsted US Supreme Court decision.
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Fully implement original plan for SORC to be RESOURCE CENTERS for all clients in need including those who reside in the community.
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SORC ICF/MR stay open.
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Reinstate the mechanic shop to repair/upkeep vehicles (cheaper than sending vehicles out for repairs).
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Use the allocated budget to maintain buildings and hire adequate staff.
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The Center should not have to send back allocated fund to the “general fund” and should go to SORC.
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The suggestion I have for the Resource Center could be to “continue using the facility.
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Open up the enrollment for new clients.
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Waiting list should be opened up for SORC.
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SORC should be used as a community center including as a senior citizens center.
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Community providers do not have doctors and registered nurses on sire. SORC and NORC do. If our loved ones have a hospital stay for several days or months. SORC and NORC provide caregivers 24/7 till the clients go back to their cottage. SORC consisting of 1000 acres is a less restrictive environment. SORC provides care for our loved ones at a lesser cost as stated in a previous DHS Plan of Care Cost study by Jim Nicholson to the legislature following Senate Interim study held on August 16, 2010. If you wish I can provide you with a copy of the POC Cost study. C&JR
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Construction for new buildings to accommodate the 125 persons now, plus at least that many more which could result in an economy of scale.
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We have staffing needs PT, OT, Speech services and recreation staff.
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Physical needs at SORC include multiple units and houses need to be sprinkled by 7/2013, new construction, road repairs, fleet replacement.
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Construction of new building or homes, using inmate labor.
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Lease or sell excess land, use the money from the oil/gas leases to have the multi units and “T” houses installed with sprinkler systems, new construction, road repairs, fleet replacement and hire therapists to include recreation staff.
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Require accountability for administration and staff in regard to: how money is spent on client welfare; how well staff is hired, trained and treated; how much care is given to clients; and how buildings are maintained.
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Have a structure to create funds – a foundation for contributions.
o
Change the name if it is not a resource center.
o
Expand the shredding service
o
Expand crafts and horticulture
19o
Public marketing
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Change the name - t is not a resource center, “Oklahoma Special Needs Facility”.
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Continue using the facility for the present clients, open up enrollment or waiting list for their special needs individuals.
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Clients at SORC are there because they choose to be. The right to choose is guaranteed by the Olmstead Act. SORC provides the 24/7 medical, physical, behavior services needed for clients who require them. This level of service is not available in community housing so facility should not be closed.
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Build it - they will come.
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State and private providers should be paid and treated as professionals that they are. Long-term care for severally disabled and handicapped persons should be recognized as treatment not warehousing.
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Make the improvements for the current buildings in use to meet the upcoming inspection for 2013, particularly the sprinkler systems. We need this done for stability right now.
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No change immediately, buildings in place and paid for, repair buildings as needed i.e. gym, swimming pool, houses and cottages.
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Need the Agriculture Department to determine the rental rate for the property.
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Rent to protect against misuse of the land – currently weeds and bushes are overgrown.
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In future repair all building to state code and above.
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Maintain all buildings to state code or above.
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Build new cottages as funding allows – use oil/gas to fund.
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Realize that there is some monies available in the form of royalty benefits for building new and improving the old.
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Changes should be far and wide: building and infrastructure modernized and expanded to accommodate a TRUE Resource Center for in on in-patient campus residents as well as community and regional outpatient services for DDS citizens including rehabilitative and therapeutic care services. The state owns these facilities and most certainly could maintain as state resources/structures. The services offered should be expanded to all citizens and taxpayers of this great state.
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Change - That DHS would accept that institutional care is a viable choice.
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People are abusing clients in group homes and over-medicating.
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Upgrade the building in need or build new ones.
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Keep the center open for those who live there and make more available to others.
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Please consider that for many of these clients it has taken years of step-by-step teamwork to reach the level of achievement for our loved ones. To interrupt or discontinue such training, routines, way of life, etc. could have serious detrimental effects on their learning achievements. I’m concerned that the clients progress will be hindered or lost due to such drastic changes. Many
20of these clients do not have the ability to comprehend the “reasons” why their worlds would have to undergo complete and total change.
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The residential population of SORC must be accommodated if their choice is to stay in a
government operated residential environment.
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Improve don’t close – this facility is only one of two government residential facilities that provide the least restrictive means for these most profoundly affected by developmental disabilities.
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These citizens have the right to at least the care they are receiving now and not be displaced for an economic reason that is not even supported by current data regarding relative cost of different residential models.
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These citizens are not “portable” just because they are disabled. Home, familiar neighbors, and trusted caregivers are just as important to these human beings as it is to any of us. They are not “things” who don’t care or are unaffected by the content of their lives, Forcing over 100 citizens to move after living in their current home for the last 40-50 years is not only cruel but unconstitutional.
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Use the facility as a full Resource Center
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At the present location SORC could become a regional diagnostic center for the southern half of the state for all Oklahomans with developmental disabilities. These centers would diagnose deficiencies and then provide services and/or housing where the client and their family chose. For SORC this could be done by leasing or selling excess land (surface only) and using the oil money to update multiple units and the “t” houses for the severely disabled.
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Obtain the real number of people on the waiting list that need the services and housing that SORC should provide for current and future residents with commensurate increase in qualified staff to facilitate these services.
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Discontinue the idea of “discontinuing housing and services at SORC and NORC.
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It is necessary for physical therapy, music therapy, occupational therapy and hydrotherapy to be reinstated as well as all other entertainment provided by SORC. The doors to the Resource Center should be opened and accept those clients on the waiting list. The more clients are accepted into SORC and NORC the more cost effective they become. Allow SORC to utilize the oil and gas royalties. Bring existing buildings up to code and build new buildings.
•
Bring the staff, particularly PT, OT, recreation, speech, hearing etc to the level needed to provide the care which has afforded the long length of life that it has cone so far and under difficult circumstances
SORC Family Input Session 1 Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of the state-administered resource centers or expanding alternative services to take their place
•
SORC ICF/MR STAY OPEN
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Guarantee a full range of physical and occupational therapy that had been fully received in SORC prior to funding cuts.
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Guarantee that the oversight, including inspections, monitoring medication, safety, abuse and injury prevention, etc. that currently exists in the resource centers will be equivalent in the community settings.
21•
Same level of oversight and supervision in alternative community settings as currently exists in state resource centers.
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Level of medical care is maintained fully at community center.
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Guarantee access to 24-hour medical care within 10 minutes of notification, as they receive now at SORC.
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Same level of oversight and supervision in alternative community settings as currently exists in state resource centers.
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Guarantee the same level of medial care including the proper administration of medication, specialists, physicians and dentists and eye doctors as needed to meet all needs.
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The state will take full responsibly for any incident(s) of death or injury to SORC clients that occurs because of misconduct or negligence because of the states failure to provide a full range of services that included the choice of a large institutional setting and will compensate the client, or the parent/guardian in the case of death, for pain and suffering.
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Clients will not be beaten, raped, bullied, robbed, starved, abused or neglected in any community setting.
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Client will be protected from predators in the community including rapists, thieves, drug dealers and other persons who are a threat to their safety and well-being.
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No errors in medications.
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This has been a viable institution. Expand services to other disabled individuals, senior citizens, or as a community resource center. Have medical residents from OK Health Sciences Center come and care for clients health needs – medical and dental.
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When I had to decide the placement of my son when he was 6 years old I was told by Doctors and DHS that it had to be a permanent placement; if he was removed from his “home” he would only live about 6 months.
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At least a full year of planning after a recommendation. Guardians should be able to make unlimited visitations to proposed placements.
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Full background checks of both operators and employees of community programs. Criminal background checks.
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Unannounced access to any guardian or a child in their community setting.
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Monthly DHS inspections including personal and medical well visit of every resident.
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I had a bad experience in a private facility – it was awful.
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I suggest that discontinuing the operation of all state administered residential resource centers would be in violation of the rights of those now living in the facilities exposing the state to potential legal liability. The right to choice recognized by the Supreme Court in Olmstead.
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From state to community – unintended consequences – incarceration and poor follow-up in community.
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Against it – we are concerned that the critical needs will not be met in a community environment putting these residents at risk. As guardians we retain the right to determine what is in the best interests of our loved ones and that is that SORC remain open.
22•
Closing of SORC and placing our family members in a group home is not safe. They are not regulated nor do they check the staff and they can’t get the equipment that they need.
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June 1999 US Supreme Court decision gives the developmentally disabled and their guardians the right to choose where they want to live. Our loved ones at NORCE/SORC are there because they choose to live there. Oklahoma should improve the facilities.
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The developmentally disabled cannot live in the community and survive. Oklahoma should improve the facilities at NORCE/SORC to accommodate the developmental disabled.
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No alternatives for closure. My family had chosen SORC for our family member and he is protected by the Olmstead Supreme Court decision of 1999 and Oklahoma State Law. He receives 24/7 care with medical, physical and behavioral services under the direction of a medial doctor, nurses, therapists and direct care staff with supervisors, case managers and a director on site.
•
The 1999 Supreme Court Decision gives the developmentally disabled and their
parents/guardians the right to chose where they want to live. We chose SORC!
•
DHS should begin to support SORC and NORCE with facilities to meet the standards the clients deserve. This was the original plan DHS had designed NORCE and SORC to be. At one time SROC was completely self-sufficient with their own vegetables, meat and they generated their own electricity. C&JR
•
Our daughter has lived at Pauls Valley since September of 1961 and it is the only home and family that she knows. In my heartfelt opinion, if SORC is closed there will be only 3 options for her.
o
She will be heavily sedated to make her compliant, or
o
She will be locked in a room (so much for least restrictive environment), or
o
She will be dead in one year or less – regrettable. FJ
•
To transfer to extended care facility for health services according to his needs.
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SORC and NORCE given priority for urgent admissions.
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Long term care facility near the family or guardian of their choice (with advise from SORC and NORCE staff).
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When B went to the group home he was taking one medication and when he came back to SORC he was on 19 mediations and he was afraid he was going to fall down all the time and within a few weeks he was back down to one medication.
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Problems clients have had when they moved into the community:
o
They aren’t supervised 24 hours a day
o
They become the target of predators
o
They are taken advantage of
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Forget the idea of discontinuation.
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Expand the services of SORC and NORCE to absorb the people on the waiting list with appropriate housing and qualified staff with physical therapies and recreation therapies to be enhanced.
23•
No alternative services by “FOR-PROFIT” entities who only seek to make money for themselves.
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As an “Okie” we should never have come to this. All Okies are know for their helping nature. Let’s take it to the voters. Maybe a 1% tax to go to SORC and NORCE only – not to be used for anything else.
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Discontinuation is not welcome. However, if the ultimatum occurs then full services must be available in a timely but not hurried or rushed manner. Same care and services must be sustained or even expanded. Expand all private facilities to accept the in-flux of SORC and NORCE as well as those on the waiting lists. Once the recognition is made SORC and NORCE become totally viable.
•
Staff and employees of SORC and NORCE should be transitioned with our loved ones as they have level of care and familiarity of client needs.
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Staff should be given full time employment as oversight to assure transition is equivalent or better than current institutional services.
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This facility should not be closed because no alternatives so far. All suggestions for improvements provided by the participants I believe are excellent for the disabled residents.
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Our family does not want SORC closed. This is our choice for SORC to stay open. Community services nearly cost my son’s life 3 times.
•
Care received at nursing homes for the profoundly mentally/physically handicapped is not to compare to care received at SORC for my son for 43 years. None of the local nursing homes will accept patient requiring this level of care. It is also more costly.
•
Leave it open. Question for legislators - Would you put your own 4 yr. old who functions normally with 3 other 4 yr. olds in a group home? Some of these children may be 61 but they have the mind of a 4 or 5 yr. old.
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Alternative services (group homes) are great for some clients but not all. The cost of providing 24 hr care to the few in a group home is expensive. It costs less to provide care to more with the same number of staff in SORC.
SORC Family Input Session 1 Question 3 - What could DHS/DDSD do to make any changes to or discontinuation of the resource centers easier for the people who live at the centers and their families (i.e. planning processes, visits to community programs, written information etc)?
•
Guarantee that the needs of every client will be equally or more fully met in the community as they once were fully met at SORC.
•
Allow an oversight committee that will be established by the parent/guardians of current SORC clients have full access to any and all community settings that may any of the current SORC clients are moved to. Access will include inspections with no notice.
•
Every former SORC client placed in the community shall receive the same services that are provided by SORC including nutritionists, therapists, recreation specialists and maintenance staff.
•
24 hour video surveillance throughout the community residential setting in which my loved one will be placed including bedroom, bathroom, entrances and exits.
24•
Provide means for parents, siblings and guardians to access 24 hour video surveillance including the provision of computer equipment should they not have that ability.
•
Guarantee that community residences will be located within 1 mile of the residence or work place of the court appointed guardian.
•
Provide tours to facilities.
•
Be informed of planning sessions
•
Provide written information of referring facilities including state reports and audits.
•
When voting to close SORC, legislators or politicians who have financial interests in a group home should be barred from voting.
•
DHS be should be able to make a recommendation to keep facility open and allow a vote in legislature to save rather than kill SORC.
•
Ensure yearly appropriated funds are spent to make the necessary improvements and that surplus monies are not sent back to the department of the state.
•
DHW/state leaders make a commitment to the continued operation of SORC as the home for critically disabled citizens.
•
Implement the plan to build smaller home-like buildings.
•
End the conflict between community settings vs. institutional care by providing a full continuum of services,
•
Rehire therapy positions to serve the clients and surrounding community.
•
Provide adequate management leadership.
•
NORCE and SORC should continue to operate as a safety net for those who are hard to place.
•
Get new equipment such as wheelchairs.
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PT, OT and Recreation staff are necessary just like nurses.
���
Stop breathing down our neck to move our sister into the community.
•
SORC and ICF/MR STAY OPEN
•
Build new homes for clients with a central location for health needs.
•
Provide a clinic with Doctor’s, nurses and physical therapy. The clients need one-on-one care. Open these centers for the community as well and for senior citizens.
•
Make this a true Resource Center for Pauls Valley and the surrounding communities.
•
Make this a regional diagnostic center at the present location which provides services for the severely developmentally disabled and those that choose to stay at the diagnostic center there would be no reason to transition.
•
Form a state committee to work with SORC to explore in detail each and every opportunity to keep SORC open and viable. Work with us.
25•
Anyone wanting to transfer to the community has that opportunity. As well as those who wish to have their loved one or relative remain at SORC should have that opportunity. Please do not close SORC!
•
There is nothing that can be done to make it easier for families and guardians to have their loved one or relative discontinue living at SORC. Many clients have been living at the SORC Regional Center for well over 50 years and call this place home. We the parents and guardians must be the voices for our loved ones and relatives, as they cannot speak for themselves. It would be traumatic to uproot clients as they possibly could not endure the move and they feel safe where they are.
•
Improve facilities and staff development.
•
SORC and NORCE should be independent from DHS.
SORC Family Input Session 2 Question 1 - What suggestions or ideas do you have about how the resource centers could be changed or what changes you think might be helpful for the future?
•
Change needs to be better that the status quo – better than it is now.
•
Build a new medical-type building for the severely disabled.
•
Buy a recently out of business nursing home that could be renovated for care of the severely disabled.
•
Do an energy analysis by June 2012 and installation of energy efficient equipment by January of 2013.
•
I do not want the large state institutions to be closed.
•
This past winter the DOC installed cubicles and phone lines at SORC. Eliminate rent payments by DDSD and house Area 1 workers at SORC campus. This will allow them to work together.
•
Money that was given to DHS for SORC was taken back and it should go to SORC.
•
Want better info. Compare apples to apples when DHS is looking at costs – particularly medical costs.
•
The care providers seem to have a huge influence on DDSD. They have a huge interest because they need the monies now that the Hissom clients are dying.
•
In coming to the conclusion that the Resource Centers are at a higher cost than the community care you need to compare the cost incurred by DHS for medical care in the community that is paid for by the OK Health Care System though Medicaid
•
We think that a big problem has been that there has not been any new building to replace the old ones that are costing so much now. I think that plans for construction of some new buildings should be pursued. Phase out over 5 years.
•
There should be service for blind clients at SORC.
•
The providers have divided the families of people who have disabled loved ones who need services.
•
SORC and NORCE should provide respite care for all care providers and families.
26•
Consolidate Centers to one location – maybe a facility with wings rather than different buildings.
•
See Resource Centers be a community with all services available in one place – with onsite dairy, farms, mildly handicapped residents were employees.
•
Install sprinklers in remaining residential units by June 1, 2012.
•
Use DOC as labor force to support the Resource Centers.
•
Funds budgeted to SORC are proposed for projects at SORC but are denied by DHS headquarters and the funds are then taken from SORC and brought back to DHS. This taking of funds from SORC amounts to some $13 million over the last 6 years. All of the living quarters at SORC could have been brought to code with that money.
SORC Family Input Session 2 Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of the state-administered resource centers or expanding alternative services to take their place
•
Don’t use any nursing home placements!
•
Security for disabled individuals.
•
I need all medical equipment and other items necessary for his total care at home.
•
Some kind of a program needs to stay in place to help keep all of these people in the Centers engaged and health – family members are not equipped to do this.
•
My son requires 24 hr services and I would like to know what facility the state has for these people.
•
We need small community group living with 24 hr oversight. Could be an individual, small group or a company that is regulated by OK Health and Human Services.
•
Eldercare
•
I need 2 full time care providers to watch my sibling 24 hours a day.
•
I do not want my sibling to reside in an old run down neighborhood where drug dealers are roaming about.
•
Medical care available 24/7
•
If state institutions are closed clients placed in community the state is not a private provider. The state should provide the care in the community.
•
Blind education is needed.
•
Daily routine and some type of work program must be in place.
•
We want them to have the same amount of service afforded them the opportunity to live as long as they have at the Resource Center. And we would want the result of a study as to how long people live in the community vs. the Resource Centers.
•
We need 24/7 supervision - an individual that is trustworthy and caring of my family member is required. Safe facility, trained provider, doctor, case manager. NOT A NURSING HOME.
SORC Family Input Session 2
27Question 3 - What could DHS/DDSD do to make any changes to or discontinuation of the resource centers easier for the people who live at the centers and their families (i.e. planning processes, visits to community programs, written information etc)?
•
To make it easier on us be up front with us on what is going on and why. If center closes have a “fitting” place for clients of all capabilities to go to.
•
I would like DHS to stop their plans to close the Resources Centers.
•
I would like my sibling to receive the same monies and services that the Hissom clients received.
•
I’d like to know what DHS is going to do to make it easier for my child and me.
•
DHS/DDSD can propose a timeline to make improvements to the Resource Centers, NOT to discontinue anything for these disabled members of society, THIS WILL NOT GO AWAY.
•
We would like to look at group homes in OK so we can see for ourselves.
SORC Staff Input Session 1 Question 1 - What suggestions or ideas do you have in regard to changes in the operation of state-administered resource centers?
•
We should approve and fund the construction of new homes. The state would only have to fund 32% of this project.
•
SORC has a good plan to construct 4 8-bed units and 2/3 of the costs of building are reimbursable with Medicaid funds. These efficient home-like buildings would cost less to heat, cool and maintain. In addition they would be a delight to many residents who have lived at SORC for an average of 32 years.
•
SORC and NORCE need to remain open to serve as a safety net for community placements which fail or are closed (as has happened in the past) and to provide respite services to community clients when family/guardians want/need them.
•
DHS should provide a full continuum of care including Resource Centers and community-based services based on Parental/Guardian choice. New buildings and respite care are needed.
•
The Resource Centers should reopen departments such as OT/PT and other facilities and open it’s doors to the public where the families could come in and receive therapy and to have new transportation vehicles.
•
DHS needs to be forthright and commit to the upkeep of SORC for the betterment of the residents and their families. Those individuals on the waiting list should be allowed to access SORC services. To do less is to withhold critical services to developmentally disabled Oklahomans.
•
Surrounding communities in the SORC area are small and can’t provide for all of the service needs of the people currently living at SORC and in the surrounding communities. It would benefit both SORC residents and people who are currently waiting on services in the surrounding communities.
•
Dental services are provided at Cimmarron Dental Group of Cushing OK. Cushing is quite a distance from Pauls Valley.
•
SORC and NORCE should remain open to provide homes for clients that are hard to place and to provide a home and haven for the clients that are on the waiting list or the ones that need a home
28when the state shuts down private facilities for violations. I oppose the question of discontinuation of the Resource Centers.
•
SORC and its sister facility NORCE should continue to operate as a safety net for the system providing homes for clients that are hard to place and public beds to take clients when the state closes private facilities for health department after client deaths. SORC and NORCE provide a safe haven for those clients until permanent placements could be determined.
•
SORC should continue to provide homes for hard to place clients as well as acting as a true resource center by providing respite care for families in the surrounding communities.
•
DHS and state leaders should commit to the continued operation of SORC as the home for critically disabled clients. Serve clients on the waiting lists instead of depriving them and is a violation of their rights.
•
OK DHS should let SORC be the resource center as it was intended to be by rehiring therapy positions, so that SORC could serve our clients and other individuals in the community.
•
OK DHS should rehire physical, occupational, speech, music, recreation and vocational
therapies, supply in house dental services, offer respite care, and restore our fleet of
transportation. SORC should be implemented as a true resource center.
•
In dealing with the community based providers, they seem to be more interested in the dollar value of the client that is being placed. I have had one provider ask to be the “payee” prior to the client’s discharge because of the time it takes the process to change payee’s. This to me is fraud.
•
As a direct care worker this isn’t just a job, to us this is our family as we are theirs. We love them as our own.
•
Parents and guardians need to know their loved ones are well taken care of because they are the ones who count. SORC has been commended many times by other medical staff at various hospitals as to the care we give our clients.
•
Provide a positive working relationship with SORC and area office staff.
•
New admissions should be allowed and offer respite care for families outside in the community.
•
SORC needs to be a true resource center open to people who need the level of care and
supervision offered at SORC, new admissions allowed for short and long term care.
•
Build new modern homes for those who live here, new vehicles for clients to be transported in.
•
Rehire therapy positions.
•
State leaders should implement the plan of building smaller home-style buildings on the SORC campus. State leaders and DHS should make a commitment for the continued operation of SORC and also stop depriving new clients from a waiting list from being placed at SORC. All lost positions should be brought back to SORC.
•
Resource Center for people in the community other than those with developmental disabilities – Speech, OT, PT, Psych, dental and Medical.
•
With a fully staffed, OT, PT Speech and even dental services, we could offer services to our residents as well as several individuals outside the facility. So many would benefit from the services, possibly even non-developmentally disabled. We could then function as a true Resource Center.
29SORC Staff Input Session 1 Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of state-administered resource centers or the expansion of alternative services?
•
Parent/guardian right to choose where their family member lives. Our clients have resided here 40 years or longer.
•
I support the wishes of the family members of SORC residents as well as the Olmstead Plan 2006 and OK State Law.
•
It seems like it wouldn’t be detrimental to this area that already has developmental resources available. The Olmstead Act just insures more choice for people with service needs. To close this facility would only take that choice away. There are not that many choices already.
•
SORC should stay in operation as a true resource center with full services for people with disabilities. DHS and state leaders should make a commitment to improve the quality of SORC as it was in the past for our citizens with disabilities. These citizens and their families should have the right to choose to live at SORC - it is their home.
•
DHS has a fiduciary obligation to provide care and treatment of those who depend on SORC for care and support. This fiduciary stewardship must include wise management of resources. DDSD needs the vision to properly maintain and care for the improvements on the land that has been in use for for needy people prior to statehood. In simple terms, this means to follow your own policies and replace passenger and wheelchair vans at 100,000 miles or 5 years, whichever comes first; maintain every aspect of the residential units until they become economically obsolescent, and then have a plan in place for capital improvements. Be open to carrying out the vision statement by providing families and community agencies an open invitation to bring individuals to the center for vocational and other therapeutic services up to and including respite care.
•
SORC returned almost 13 million over the last 5 years that was budgeted for SORC. This money could have been used to build here.
•
Director Hendricks hired a company to do a study of the Resource Centers in the late 90’s or early 2000’s to see if they would be used by the community.
•
Support parents choice – its about the clients and what is best for them and their parents.
•
If NORCE and SORC are to be discontinued as permanent residential facilities, they should continue to provide respite and emergency and intake placements as well as OT, PT, Speech, Psych, outreach services for evaluation and stabilization.
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I support the spirit of the Olmstead that allows the parent/guardians to choose. I oppose the discontinuation of the Resource Center.
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Support the spirit of the Olmstead Act and support parent choice.
SORC Staff Input Session 1 Question 3 - What could DHS/DDSD do to make the changes to or discontinuation of the resource centers easier for the staff working at these locations?
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Changes need to be that the state administration show more support by allowing us to use the monies that are returned at the end of each fiscal year for use to hire more professionals, build more energy efficient housing and replenish our very depleted vehicle fleet.
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I oppose the discontinuing of the Resource Center. I support the Parent/Guardians choice and the Resource Centers should be maintained as an option.
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The issue in not our jobs!! The issue is the clients and their wellbeing and their rights being upheld.
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We support the parent right to choose. If the parents choose SORC then they should not be forced to move into the community for placement in a group home.
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DDSD needs to continue to involve family in the transition process and honor their choices as the Olmstead decision allows including ICF/MR placement (at SORC and NORCE) especially when behavioral issues or medical issues make community placement difficult or unlikely.
SORC Staff Members - Input Session 2 Question 1 - What suggestions or ideas do you have in regard to changes in the operation of state-administered resource centers?
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DHS and State Leaders need to utilize SORC for what it was intended for. They should continue to care for critically disabled clients provide respite care and assistance to surrounding communities.
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Allow facility to use all money allocated to the facility for the facility.
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Allow the resource center to operate a a true resource center – provide respite and care to vulnerable individuals (serve as a safety net).
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Build new 8 or 16 bed residences that would comply with all mandatory regulations. Old buildings:
i.e. Murray Hall, Marland, Calvert, Kerr, Murray, Gary Jr, MUS could all be torn down and eliminate the expense of maintaining buildings not energy efficient or cost worthy.
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I think that smaller, more cost effective home-like buildings should be built to replace the existing buildings that do not meet the building codes.
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OK DHS should rehire therapy positions and make services available to not only SORC clients but the hundreds of individuals in the community. Offer speech, occupational, physical, therapists and use the vision of CSORC as a true resource center.
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State leaders should implement the plan of building smaller home-style buildings on the SORC campus. The agency is currently spending approximately $100,000 to bring old dilapidated buildings up to Medicaid Standards, instead of investing in the future of this critical facility. A plan has already been developed to build at least four 8-bed units at less than $300,000. Much of the cost would be reimbursable according to the Medicaid formula.
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Use the facility as a true resource center.
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OK DHS should facilitate both the community and the institutional setting to provide a full range of services so that it would be easier to identify the individuals who need services. This would include stabilization and respite.
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Work as a team with area placement facilities to provide a full range of services to better provide for all clients at SORC and in the community. Work together to identify the needs of individuals needing more specialized services.
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SORC and area DDSD staff should work as a team to provide a full range of services for clients residing at SORC and the community.
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True resource center for additional groups such as short-term overnight emergency respite care, short-term inpatient respite care, 30-90 day respite for evaluation to determine placement needs and options and available to community waiting list clients who may need short-term emergency care. All to be available to community and waiting list clients.
SORC Staff Input Session 2 Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of state-administered resource centers or the expansion of alternative services?
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Due to the compromised health and emotional and psychological issues suffered by the clients who live here, I believe their very lives depend on the level and quality of care they receive at SORC. I don’t have a suggestion.
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I support the wishes of the family members of SORC residents as well as the Olmstead decision and Oklahoma State law.
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Support the spirit of the Olmstead Act.
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I support the families right to choose where their loved one resides. However, if the facility closes I believe current staff, who know the clients and their needs, should be able to continue caring for these clients in whatever setting.
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Support family rights and keep our individuals safe. Most of the clients family is each other they have been together for many years.
SORC Staff Input Session 2 Question 3 - What could DHS/DDSD do to make the changes to or discontinuation of the resource centers easier for the staff working at these locations?
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DDSD Area Office should work here at SORC. We don’t work together like we should.
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SORC and Area office staff should continue to work as a team to provide a full range of services to benefit residents at SORC and in the community.
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SORC and its sister facility NORCE should continue to operate as a safety net for the system providing homes for clients that are hard to place and public beds to take clients when the state closes private facilities for health department after client deaths. SORC and NORCE provide a safe haven for those clients until permanent placements could be determined.
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What happens to the staff that have been here for 20-30 years and taken care of these clients?
NORCE Family Input Session 1 Question 1 - What suggestions or ideas do you have about how the resource centers could be changed or what changes you think might be helpful for the future?
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No nursing homes – inappropriate care.
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What choices are families going to have if they have a loved one born with a handicap
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More community involvement – it is hard to rent in community.
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Need more jobs or workshops in community like thrift shop or green house shop.
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Enlarge and convert NORCE into a large complex of group homes similar to those recently built at NORCE.
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More workshops on a large scale like the Recycling Center
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My personal experience with DSL homes in different towns did not meet the needs of my son. He has benefited greatly at NORCE.
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Combine the two facilities and use resources from both to serve the clients, providing the same services now provided at NORCE and SORC.
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Some of the buildings sitting empty, could be torn down and new ones built, like the two new ones that were built recently.
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The large buildings on NORCE could be torn down and smaller homes could be built.
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The clients in the hospital at NORCE need 24 hour care which is not available in the community.
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Mainstreaming the clients into outside homes will cost the government more money and our loved ones will receive a lot less care.
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State prisoners have better living facilities, education (prisoners have the choice of doing right or wrong). The handicapped people, they don’t have a choice of being handicapped) and there facilities are run down.
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Have a special committee formed to research the needs of the residents of NORCE and SORC for DHS is understaffed and how can they handle this added responsibility.
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Form or hire a group to come in and look at efficiencies that could be made as NORCE and SORC.
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Politicians should familiarize themselves with the care clients receive at NORCE and SORC.
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The state has dismissed qualified personnel who could fix the equipment that is needed badly for the clients. These are people that are gone and hard to replace.
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People who work here know my brother. He can’t speak but they know when something is wrong and they know how to communicate with him.
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Need more direct care givers for day-to-day care.
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Incentive for the long-term workers. Better pay or something to help them keep up the good job.
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Some clients cannot be served in the community. They need 24 hour care with properly trained staff.
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Consistent staff – not always changing people on the buildings.
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NORCE needs to be kept open. Combine NORCE and SORC, update some at NORCE and KEEP NORCE. Get more workers and caretakers.
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Provide respite care at NORCE for clients within the community.
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The NORCE campus has brick on their old buildings that could be an asset for expansion. NORCE already has two new buildings and plenty of room for growth. We could also move those from SORC to NORCE and focus on improving one facility.
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I know that these “institutions” are expensive and many people don’t like the idea of this type of living. But those people have no idea what the clients are like. They think that all of them can live in group homes, and they can not. I can see closing all but one, but not all of them. If Janet had to leave NORCE she would have to live in a nursing home where there would be no activities, and certainly not the medical care she needs. She cannot do anything for herself including eating. She could not function in a group home.
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They have a higher tolerance for people with disabilities, the community, the authorities, the public in general. We moved my brother closer to OK City. They had a problem with some workers when the police showed up and Tazered my brother. They broke his collarbone. Obviously they cannot tell the difference between a disabled person and a criminal.
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I would like to see the community services that serve the medically complex person.
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No group home, No nursing home. My grandson requires one-on-one and group homes and DSL houses do not work. We have tried them and they failed. NORCE teaches the clients who can attend classes.
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NORCE has several things that are necessary for a facility like this. They have a dentist and doctor on call at tall times.
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No nursing home or definitely not in any group home. The staff at NORCE are qualified, experienced personnel. Most of these clients are totally disabled. They need qualified personnel 24 hours a day.
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My brother needs special care that is provided at NORCE. NORCE has a yearly plan. He has a job - recycling, he has been here 28 years. This is home for him. Environmental change causes illness maybe death. My brother cannot talk.
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Provide services to the clients already being served at NORCE and SORC but with full funding and full staffing instead of the bare-bones approach at present.?
NORCE Family Input Session 1 Question 2 - What suggestions or ideas do you have in regard to discontinuing the operation of the state-administered resource centers or expanding alternative services to take their place
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Bad idea. Legislature should disapprove of this part of the plan. Since we do not want NORCE to close my suggestion is to keep it open. We have some of the best doctors and nurses and workers that take very good care of the clients here.
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Please do not close NORSE. We don’t want alternative services. Our grandson does not adapt to changes. He’s doing really well here at NORCE. They have helped him so much. He is no longer over medicated, as he was when he came here.
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I recommend that if they move you work to maintain their routine. If they don’t work out in a certain amount of time they should get to come back and have a place here.
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I do not think that you should discontinue or expand alternative services. You have already invested in NORCE with a couple of million dollars. I think that with the revenue that we would have focusing on one facility and with the help of the PGA I know that it would be a success.
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If both facilities are closed, the state should provide a place where my severely epileptic child – also severely retarded – can have 24/7 medical care along with many other services. Who would decide where she would go.
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My son would not be able to survive in a nursing home. He does need 24 hour care. The people in the hospital need to be where a Doctor or nurse could be available and I believe NORCE is the only facility with this option.
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If transition hat to happen, let the familiar staff go with the client to help ease them into change.
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Provide more training for the staff here at NORCE.
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Clients have special needs. They are in an adult body but have a child’s mind. They need to have a better understanding of the clients at NORCE.
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State must provide 24/7 medical services for the clients because it is very difficult to get
appropriate medical care in the community.
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They need more agency providers within the community and better pay so you can get qualified caretakers.
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More funding and services for the community and easily accessible to parents and guardians with clients or relatives kept at home or in the community.
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NORCE provides specialist services here, otherwise if you take them out of NORCE you will be traveling taking your loved one everywhere – even to Tulsa.
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My son has improved so much since being here. He has learned to say words that he could not do before no matter how short staffed you have made them. They still put forth effort to help the kids.
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Enid is respectful to the needs of handicapped people.
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If this place was to close why not have all people with medical needs placed out here so that the clients/family members don’t have to travel.
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Handicapped people or special education clients don’t adapt to change very well. Sometimes they die. Some will be fine and some will not.
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Some clients can not adapt to change and moving out of their daily routine and environment would be detrimental to their health.
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I know several group homes that have hired people with no health training, and some have had criminal records. I know one where the police has been called several times because of employees getting into fights.
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NORCE has been open 100 years. It is a very good place for the clients, it is there home and they do not like change, they do not do well with change.
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You need family involvement and all decisions should include people who are working with the clients.
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Integrate clients into the community slowly and not all at once and the parent/guardian chooses the place or home.
NORCE Family Input Session 1 Question 3 - What could DHS/DDSD do to make any changes to or discontinuation of the resource
centers easier for the people who live at the centers and their families (i.e. planning processes, visits to community programs, written information etc)?
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Communication with and from DHS/DDSD
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Direct care workers should be consulted on these ideas, on change and on renovations.
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I think that when it comes to expansion or construction growth they should get input from the PGA. For example the department wasted thousands of dollars by trying to stay in house with no deadline on completion of the job.
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Do not move the residents from their home their place of security and the people that know their needs, and many of them are expanding their abilities to new skills.
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I also think that the planning processes should be conducted with the input of members of the Parent and Guardian Association.
NORCE Staff Input Session 1 Question 1 - What suggestions or ideas do you have in regard to changes in the operation of state-administered resource centers?
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Expand the vocational department and alternative services. Provide monetary grants for vocational and alternative programs for the disabled. This would help non-waivered individuals have employment services.
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Let Liberty handle their cost of operation themselves.
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Work to find things to make that are productive for clients to sell.
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Develop day care for employees to use on campus.
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Use the land for a farm, wind turbines or water/mineral rights all to make more money for the Resource Center.
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Make room for individuals that need immediate short term care.
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Help make NORCE a real resource center.
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Our pharmacy at NORCE could and should expand to assist all community clients as well as those at NORCE.
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We need building upgrades to the Halfway House and to Chickasaw.
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Provide resources for families in the community:
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Respite care
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Medical/Dental services
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OT, PT, Speech services
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Get away from large housing units to small settings with fewer people per house.
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Become a true resource center where families can come to get information and support for their lived ones.
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Use the work programs for people in community.
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Let the resource center bill off the waiver.
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Develop a wheelchair and adaptive equipment repair service
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Provide family atmosphere and medical treatment to our residents 10 minutes away.
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NORCE has an infirmary with the capacity of eight. In the past we have taken individuals in from the community to access, treat, and stabilize the individuals using staff, medical services and pharmacy that are all in house at NORCE. We can extend this type of service that in turn would save money.