Independent Living Research Utilization
Independence and Transition to Community Living:
|
Person |
Annual Costs For Congregate (Nursing Home) Care |
Annual Costs For IL After One-time Expenses |
One Time Expenses |
Savings From IL After One Time Expenses* |
Charles |
$51,110 |
$24,226 |
$8,000 |
$26,874 |
Jane |
$51,000 |
$25,290 |
$930 |
$25,710 |
Mary |
$51,110 |
$10,950 |
$0 |
$40,150 |
Carol |
$62,050 |
$27,158 |
$5,690 |
$34,892 |
* Not including housing subsidy.
-
Charles is 63 years old, and has been living in a nursing home for over 40 years at an approximate rate of $140 per day. One-time expenditures covered a new wheelchair and other adaptive equipment.
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Jane, a 36-year old resident of a rehabilitative nursing home, had tried unsuccessfully to live independently. She currently resides in transitional housing and receives independent living services from the center. After one-time equipment and training costs, her annual expenses will decrease by about $10,000.
-
Mary is 36 years old and has spina bifida and depression. Her supported living services include a homemaker, supervision, and personal assistance, reducing her daily costs from $140 to $30.
-
Carol is a 25-year old wheelchair user who attends community college. Plans are being made for a more independent living arrangement, so cost figures represent estimates.
Ellison and Ashbaugh, 1990, p. 15-16
Replication
Long-range planning and a strong, united advocacy effort are required to replicate the CSPPPD. One major lesson independent living advocates have learned is that they should agree upon strategies and outcomes before a new project is initiated. Also, centers willing and able to undertake administration of complex transition programs should be identified up front. Administrative and staff members must have a strong commitment to independent living philosophy and must vigilantly guard against the bureaucracy's tendency to move toward a medical model program.
Wyoming Independent Living Rehabilitation,
Incorporated
Casper, Wyoming
Introduction
Wyoming Independent Living Rehabilitation (WILR) provides independent living services in the state that is ninth largest in the nation in land mass and smallest in population per square mile. The center serves the entire state's population of about 450,000; 60% of the service area is urban and 40 % is rural. Casper and Cheyenne are the two largest cities with populations just over 50,000 each; the remainder of the state is rural. The western part of the state is mountainous, the eastern part is dominated by the Black Hills, and the central portion is flat. Coal, agriculture, tourism, and oil are the primary industries.
The center operates with a total of 18 staff--four funded under the Title VII, Chapter 2 Older Blind program--and the rest funded under Title VII, Parts B and C. The center established its main office with Part C independent living funds in Casper, but most services are delivered through satellite offices scattered throughout the state. Counselors work from these satellites or from their homes, each providing services in several large counties.
Fortitude and creativity are essential components of services and advocacy in this extremely rural and diverse geographic terrain. Center staff must provide services within the framework of attitudes and experiences of the rural residents, many of whom have never left their small communities. Physical rehabilitation is available in only two cities; most people who acquire disabilities often are required to go out of state or at least away from the local community. Convincing a recently disabled person to obtain basic physical rehabilitation can be a major obstacle.
Project Initiation
Transitional services from nursing homes to independent living have been an integral part of WILR's services since the center's initiation. Bob Carbon, the center's founder and first executive director, is a quadriplegic who spent most of his life under the care of family and friends with no real expectations of independence. A visit to CIL in Berkeley convinced him that things could be different, and he set out on the road to independence and self-actualization. Once he attained independence, his life's mission became advocating for equal access and opportunities for independence for others. He and the center's staff and board believe strongly in personal dignity, right of choice, and self-determination for all individuals, regardless of age or disability. Keeping people out of nursing homes and helping people to leave institutions always has been, and always will be, a priority for the center.
Services
The center emphasizes keeping people out of nursing homes, believing that "prevention is superior to care." Most people, whether young or old, prefer to stay in their own homes, and this right of choice and personal dignity is the bedrock of center services. Consumers receive services in their own home because of the rural nature of the center and the basic lack of accessible transportation in the area. It is a belief of WILR staff that if people learn independence skills in the setting where these skills are required, chances of success are enhanced.
The primary method of avoiding institutionalization is to get into the person's home as soon as possible after the injury or illness occurs to provide advocacy, peer counseling, independent living skills training, home modification, adaptive equipment, referral for personal assistance, and other services. If the individual is a candidate for admission into the nursing home, the center provides temporary services to delay nursing home placement. If the individual wishes to leave the nursing home--and most do--center staff begin working with other agencies to put the pieces together to prepare for discharge. If the person wishes to stay in the nursing home, the center works to attain the highest level of independence possible in that environment. Personal choice drives the services an individual receives from the center, and this fact contributes to an 80 % success rate in attaining consumer goals.
To be eligible for services, an individual must have a severe disability that impedes independence as well as a reasonable expectation that services will help in attaining, increasing, or maintaining independence. Eligibility can usually be established by a center staff person at the first meeting, but if the disability is not apparent, a doctor's certification is required. The center serves people from birth to death, and maintains no financial eligibility requirements.
Referrals to the center come from family, hospitals, nursing homes, community agencies, or the individual with a disability. The center makes contact with the individual within five days of the request for service. The intake procedure is consumer-oriented, with an application written in easily understandable language. The consumer's signature serves as an official request for services. Financial information is requested to enable staff to be more effective in informing the consumer about and to advocate for additional programs and services, but this information is not used for center program eligibility.
Next, a skills trainer works with the applicant to do an assessment of activities of daily living, including toileting, bathing, transferring, dressing, and cooking, in order to determine what assistance or adaptations would be necessary for the individual to remain independent. More than one service generally is required, so the applicant prioritizes these needs to form the beginning of the independent living plan. Teaching and advocacy start during the first meeting, as do building rapport with the consumer and encouraging an expectation of success.
This process does not differ significantly for individuals who are already in a nursing home or in the hospital waiting for nursing home placement. If the person is in the hospital, plans can be developed to avoid placement or to facilitate discharge from the nursing home as soon after placement as possible.
Staff at WILR have become very good at turning ordinary community resources into what is needed for individual consumers. Consumers who need adaptive equipment may not necessarily need something made "for the handicapped." They may be able to piece together locally available goods and services that are cheaper and more readily available. The emphasis is on allowing people to do things for themselves and avoiding dependence upon the service system. One example of innovation is the center's use of UPS or Pepsi Co. to deliver equipment to another part of the state free of charge. As executive director Carol Kinney puts it, "We know who goes where. If the center needs something delivered in another part of the state, we call around to see who's going. We are organized and connected to others in the community. We often say that Wyoming is a small town with long roads."
Contacts
No formal arrangements exist with area nursing homes, but social workers and administrators are among the most important contacts the center has in assisting someone to leave the nursing home. Most of these professionals do not have rehabilitation or independent living backgrounds, but are usually supportive once the center explains independent living services and philosophy. Bob Carbon initiated these one-on-one education efforts, but staff or consumers currently train nursing home employees. The center tries to find someone with a disability that matches the disability of the resident who wants to move in order to show an example of independence and self sufficiency--usually enough to convince the nursing home staff of the viability of independent living programs.
Because of the rural nature of the service area, center staff must maintain contacts with a plethora of agencies and service providers. Everyone must work together creatively to arrange a service package that will allow an individual to return to his or her community. Services may include meals on wheels, personal assistance (provided through a Title XIX Medicaid waiver), housing modification, or a visiting nurse. Most people will return to a farm house or a very small community and may find themselves ineligible for a needed service because it is only provided in the next town or county. Volunteer organizations and churches often must fill in the gaps.
In and around Casper, a depressed economic climate and limited occupational opportunities are causing young adults to leave the area. As a result, many elders find themselves with little family support. Consumers, center staff, and community resources must work together to construct an emotional as well as physical support system for the consumer. Senior centers help to fill in this gap for those with transportation who can get to the center, but those without transportation remain isolated. Some nursing homes are also establishing semi-independent living arrangements and subsidized apartments to meet some of these needs.
Resources
The center's annual operating budget is approximately $850,000 and is derived from Title VII, Parts B and C, and Chapter Two. Since all of these resources are available to assist with the transition process, it is impossible to judge the total resources allocated to these services.
Multicultural Issues
One of the most interesting facets of WILR's innovative rural program is the services it offers to the 9,000 Native Americans in Wyoming. Wind River Indian Reservation houses two separate and historically warring tribes, the Shoshone and the Arapaho. Some Sioux, originally from a reservation in South Dakota and now scattered throughout the state, are also served by the center. The center has struggled with how to deliver culturally competent services since its inception, and last year used Chapter Two funds to hire a staff person to serve the elderly blind Native American population. This staff member is a Native American with a disability herself; she speaks both the Shoshone and Arapaho languages, and moves comfortably between Native and Anglo cultures. Her presence has resulted in a resounding increase in the number of elderly blind consumers served by the center.
Barriers
Not surprisingly, lack of transportation and personal assistance are the two major barriers to making transition into the community. Only two cities in the entire service area have accessible transit systems. Portions of the rest of the state are served by paratransit services, but the infrequency and restriction of service make them difficult to use.
The only personal assistance available in the state is provided under a Title XIX Home and Community Based Services waiver. Only those deemed at high risk of institutionalization can receive personal assistance services, which are based on a medical service model. Individuals acquire personal assistants through home health agencies and have little control over who provides the service and conditions under which the service is provided. Each county has a limited number of "waiver slots" available--never enough to meet the need--and other counties have slots but no personal assistance providers. In either case, because the services are so limited, the center works with respite care, visiting nurses, homemaker services, family, and even volunteers to piece together enough hours to allow the individual to live in the community.
Lack of accessible housing is also an issue, since laws requiring access generally apply only to new multi-family constructions, and few new units are being built in rural areas. Most houses in Wyoming require major modifications to become functionally accessible because of the age of most structures. A related problem is the high percentage of mobile homes in the state, most of which are very difficult to modify. A simple modification, such as widening a doorway or installing a grab bar, may cause structural damage. Center staff must be extremely resourceful in dealing with these obstacles.
Staffing has not been a serious problem for this program: many staff have been with the center for over ten years. The service area of each staff person is restricted to 100 miles, so little overnight travel is required. The ability to work from home, flexibility of work schedules, and autonomy in decision making are major factors in staff longevity. One problem with this arrangement is that staff feel isolated and out of touch with their peers, resulting in significant telephone usage. The center has recently purchased computers, and staff now keep in touch through a computer network.
Evaluation
No statistical information is kept on the number of individuals who move from or are kept out of nursing homes. But statistics do show that the center serves a predominantly older population; the average age in the elderly blind program is approximately 74.8 years and rising, and the majority of consumers in other center programs is over 55. During the last eight years, the center has served 1,326 people, 724 in the last three years. Almost half of these consumers were 55 and older. Statistics also show that staff continue to provide more services to increased numbers of people with the same limited dollars, while maintaining a high quality of service.
The center throws a party every time a consumer is "saved"--kept out of a nursing home or institution. Sometimes a seemingly insignificant service, such as a $450 talking glucose monitor for an elderly diabetic, results in a "save." In another case, a medication evaluation allowed a consumer to remain home. In some cases, consumers increase their dignity and quality of life while choosing to remain in a nursing home. One visually impaired man in a nursing home became more independent when he received a closed circuit TV and mobility training. This learning disabled man had his first opportunity to learn to read at age 72 and was able to read a book to his grandchild before he died.
Replication
This program could be replicated by any rural center with dedicated and creative staff willing to think broadly about options and work creatively with other service providers. A board member, staff member, or consumer with a severe disability is also essential to educate service providers about independent living and to provide a role model for consumers. Another plus is the attitude of self-sufficiency and frontier spirit found in most rural areas--key ingredients for success in any program.
Topeka Independent Living Resource Center
Topeka, Kansas
Introduction
The Topeka Independent Living Resource Center (TILRC) was formally initiated in 1980 with a grant under Title VII of the Rehabilitation Act. During the last 15 years, the center has grown from a very small organization started by a local disability group to a large center with a staff of 37 and a budget of approximately $7 million. The center provides core services to Topeka, a city with a population of about 100,000, and Shawnee County, with a population of about 20,000 people. These services include independent living skills training, peer and legal advocacy, communications services such as interpreters, housing assistance through referral and advocacy, and services to the deaf-blind population. The center also assists consumers with relocation by providing transportation and sometimes even muscle power to move furniture. Additionally, the center furnishes PAS to about 50 of the 105 counties in Kansas and has hired an attorney to provide legal assistance, Social Security benefits counseling, and advocacy to consumers around the state upon request.
TILRC strongly emphasizes visible, in-your-face advocacy on ADA compliance and enforcement of other civil rights laws. There is much overlap of center staff and consumers with the local ADAPT (American Disabled for Attendant Programs Today) chapter, which makes collaboration for advocacy easy. The center is proud of its vigorous commitment to community change and the lack of hierarchy between consumers, staff, and board members.
Project Initiation
Mike Oxford, the current executive director, joined the TILRC staff in 1991. He arrived at the center with experience assisting people to leave state hospitals, detailed knowledge of Medicaid waiver regulations, a deep commitment to independent living philosophy, and an intimate involvement with the local ADAPT chapter. He was placed in charge of designing and implementing a strong independent living core service program. When he arrived, the center had a staff of eight people. He felt a strong desire not only to increase the center's advocacy, but also its service accountability.
Shortly after his arrival, Mike became assistant director and instituted a staff training program on independent living background and philosophy. The History of Independent Living, a monograph produced by the Kansas Research and Training Center, helped him to familiarize the staff with Section 504 of the Rehabilitation Act and with the demonstrations of 1977 against the U.S. Department of Health Education and Welfare to force promulgation of implementation regulations. The monograph also highlights early movement leaders, such as Judy Heumann, Ed Roberts, and Marca Bristo, and features descriptions of early ADAPT demonstrations for accessible transportation.
Mike was concerned that people with mental retardation, traumatic brain injury, and long-term mental illness were not being served by the center. He showed videos about deinstitutionalization and taught staff about "normalization"(4) and other concepts in the developmental disabilities/mental retardation (DD/MR) movement (Wolfensberger, 1972). He tried to get staff to understand that independent living is not a static concept; that the ability to function and the level of assistance needed might vary from person to person, but that everyone deserves a shot at independence and freedom in the community. No one should be written off as too severely disabled to benefit from independent living services. This philosophy puts the burden upon the teacher, trainer, or counselor to present the material appropriately and to advocate for and to provide the community support necessary for each individual to benefit.
Additionally, Mike worked with TILRC staff to construct independent living plans with meaningful goals and objectives, emphasizing not only services, but rights and responsibilities. He reorganized paperwork demands so that staff could get out of the office and provide services in the community--in the consumer's home, at a local McDonalds, or even under a bridge. The center recently has begun to serve a large contingent of homeless individuals through these efforts, assisting them with housing location and community services.
Another impetus to strengthen independent living programs came from an $86,000 contract to provide independent living services to clients of the state vocational rehabilitation agency. As center staff worked to strengthen independent living services for this population, they realized that many contract activities were transferrable to other populations, particularly to people living in nursing homes.
In addition to forces inside the center, several external activities focused the center on assisting people to leave institutions and nursing homes. First, during the late 1980s and early 1990s, the state of Kansas began downsizing and closing institutions. Much of the rationale was based upon cost savings, but some state officials realized that more humane, responsive services could be provided in the community. Additionally, parents, service providers, and advocates applied pressure to step up community placement activities. The center, with its new emphasis on serving a cross-disability population, wanted to play a significant role in these efforts. Building upon its activities to teach residents of a local hospital-based care facility about their rights, the center began to explore the possibility of serving the DD/MR population. TILRC soon discovered that a license was necessary to attain funding and referrals for people from Community Mental Retardation Centers (CMRC), the gatekeepers for people in state hospitals. The center applied for a license to serve this population, even though center staff viewed licensure as a "meaningless paperwork process," according to Mike.
The second major impetus to focus the center on institutionalized consumers was passage of the state Self-Directed Personal Assistance Act in 1988, giving people with disabilities the right to direct their own personal assistance services. Prior to passage of the Act, all personal assistants were employees of the state, based upon an Internal Revenue Service (IRS) ruling that required the funding source to deduct taxes and Social Security payments from the wages of the assistant. Consumers were quite unhappy with this arrangement since it permitted the state agency to hire assistants and to determine hours and payment. To alter this system, the Nurse Practice Act also needed to be amended to allow people with little or no medical training to perform non-medical or quasi-medical tasks such as bowel care routines and medication dispensation. Under the amendment, a doctor must still sign off on an individual's care plan when invasive, quasi-medical tasks, such as injections or in-dwelling catheterization, are performed, but no certification of personal assistants is required.
Advocates were disappointed that over a year after this legislation was passed, consumer-directed PAS services were still not being provided. With assistance from Kansas Legal Services, TILRC and Independence, Inc., of Lawrence, Kansas, advocated with several consumers to sue the Kansas Department of Social and Rehabilitation Services (SRS), the state agency in charge of implementing the PAS program. SRS subsequently hired a person with independent living background and philosophy to write implementation regulations. By 1991, when Mike was hired at the center, the self-directed PAS program had just been implemented in Topeka and Lawrence.
Services
The center's attempts to "spring" someone from a state hospital differ from the procedure to remove someone from a nursing home, primarily due to the extent of cooperation with monitoring agencies in each situation. In cases where the potential consumer is in a state hospital, the center is usually contacted by a disgruntled family member. Hospital staff generally are not supportive of either the resident's desire to become more independent or the center's efforts to provide services, and the situation often becomes adversarial. According to Mike, "People need to be pried out of the institution." After visiting with the consumer and the family member to determine what supports and assistance measures are needed, center staff attend meetings with staff of the hospital and the local CMRC(5) to hammer out an independent living plan. Services delineated under the plan, such as PAS, case management, and skills training, are covered under the Medicaid Waiver Program. An individual can choose self-directed PAS or can identify a surrogate, such as a parent or guardian, to manage the services. The plan must be signed by the consumer or guardian, hospital and CMRC staff, the head of the state hospital, and the director of the Department of Mental Health and Retardation Services (DMH & RS). Because these agencies control the system and have an interest in keeping consumers dependent upon the services they provide, the center gets very few referrals. According to Mike, "It's a very tough process."
People in nursing homes (or those in danger of being institutionalized) who have low income levels are also served under the Medicaid Waiver Program. However, relations between the center and SRS are congenial since this agency is committed to diverting funds from nursing homes into the community. Additionally, SRS has a longer working relationship with center staff and is more familiar with independent living philosophy. People in or at risk of being placed in a nursing home also have an easier time obtaining Medicaid waivers because the original formula used to determine how many people could live in the community under the waiver program was based upon the number of nursing home beds in the state. Kansas has a surplus of nursing home beds, and thus, a surplus of slots for services. The large number of certified nursing home beds has virtually made the community-based Medicaid Waiver Program an entitlement for individuals with disabilities, although the state legislature continues to cut services not required by the federal government. (See Section V. (B) for a more complete discussion of this issue.)
In the nursing home scenario, referrals are obtained from SRS, other consumers, family members, or human service agencies. Once a center receives the referral, services are provided in typical independent living fashion. A skills trainer or peer advocate meets with the person to explain services and to work on developing a service plan with objectives and outcomes based upon the individual's stated goals. In general, the skills trainer provides services but the consumer may also receive services from a peer advocate or, in complex cases, the staff attorney. A recent addition to the TILRC's services is a toll free "800" number staffed by long-time independent living consumers who provide expert, grassroots technical assistance and peer support to newer consumers.
SRS uses Medicaid Waiver funds to contract with the center to provide PAS services and makes the center the payer of record. The contract covers PAS management training, technical assistance, tax deductions, and processing of PAS payments, but does not cover counseling, advocacy, or other independent living services. These services are provided with other funds. The center pays assistants' wages, handles federal, state, FICA, and unemployment taxes, and provides worker's compensation. Assistants are paid $6 per hour to start (a decent wage in rural Kansas) with a 25-cent raise after three months. Another 25-cent raise is then scheduled annually contingent on a satisfactory evaluation by the boss (the consumer). A benefit to the person receiving services is that this process provides an incentive for the assistant to remain with the same consumer. Currently, some long-time workers are receiving $7.75 per hour. If the worker gets an unsatisfactory review, a center staff person will follow up to determine why the assistant is still employed and what can be done to improve the situation.
Contacts
Passage of the Self-Directed Personal Assistance Act was integral to the success of the center's deinstitutionalization efforts. A key contact during advocacy for the bill was the director of the Kansas Commission on Employment of the Handicapped. He articulately advocated for a consumer-driven PAS program with state officials, the legislature, and the public, and set his staff to work researching Medicaid Waiver requirements and exemplary programs in other states. The Kansas Association of Centers for Independent Living (KACIL) also played a major role, assuring that plenty of consumers were on hand to testify and to lobby for the bill.
A less orthodox tactic was to contact other organizations with involvement in the health care system, such as the state association of nursing home administrators, nurses' organizations, and associations of insurance companies, to educate them about the issue. Some of these organizations actively opposed the bill, but bringing them into the process allowed advocates to monitor their activities and be proactive in addressing their concerns. According to Mike, "This inclusion of our potential opponents in the process was extremely controversial among the advocates, but it allowed us to formulate responses to their arguments before we got to a legislative hearing." Including opponents in the process also laid the groundwork for productive relationships once the bill became law.
Another key to success was the close relationship with Gina McDonald, a former center director hired by the state to write regulations to implement the PAS program. She consistently turned to centers for advice and input while developing the regulations and gave them an inside track on development of the systems and procedures which centers would need to administer the PAS. This allowed centers to have their systems up and running by the time services were initiated.
Two other major players in establishment of PAS services were Ray Petty, executive director of the center in Lawrence, and Mike Donnelly, former executive director of the Topeka center. They were visible advocates during the fight for passage of the legislation and pioneered implementation of PAS at their centers, thus turning the legislative promise into reality.
Resources
A simple contract between SRS and the Topeka center governs the management of the PAS program. The center is paid $10.40 for every PAS hour to provide skills training, advocacy, and other services, as well as the assistant's wages and paperwork management. Payroll for assistants runs about $500,000 per month. The hourly fee currently is sufficient to cover center expenses associated with the services. However, the worker's wages increase with length of employment, leaving the center with a lower percentage of funds to administer the program. As longevity of employment increases, the center will need to advocate with the state for a higher program fee.
Multicultural Issues
When the PAS program was initiated, the center made concerted efforts to make sure that qualified people who represented the diversity of the community were hired. For the most part this strategy has been successful. The Hispanic community in and around Topeka is strong, and the center desires more involvement with this population. Given the generally insular Hispanic communities, the center feels a need to find someone who is trusted by the community to provide services effectively and appropriately.
In addition, people of some cultures, Hispanic communities among them, feel guilt or shame about a family member with a disability and would prefer that the family "overcome" their adversity on their own rather than seek help from outsiders. This philosophy makes underserved populations difficult to reach and to serve.
Barriers
Resistance of officials within the DD/MR system is a major barrier to the center's involvement in deinstitutionalization. Services for people leaving state hospitals are still based upon a medical-model philosophy, with an over emphasis on case management. For example, almost immediately after becoming licensed, the center received two referrals from DMH & RS. Both individuals made a successful transition to the community in fairly short order and the center ceased its involvement with the two individuals. DMH & RS wanted more monitoring and case management, which the center saw as unnecessary. Because of this and other philosophical issues, obtaining referrals from DMH & RS remains an on going problem.
According to Mike, everyone who leaves a state hospital is case-managed, whether or not this supervision is really needed. Consumers' lifestyles are scrutinized by case managers who make moral judgments about their clients' associations, liquor consumption, and sexual activities. Consumers can be coerced into changing their behavior with threats of institutional replacement.
Another problem is the way in which the concept of "assisted living" is being implemented. Nursing home corporations have begun providing assisted living services through congregate apartments adjoining a nursing home. This model is problematic for several reasons: first, individuals are forced to relocate in order to receive services; second, funds are being diverted from consumer-directed services into assisted living programs with less consumer direction; and third, individuals can move smoothly from supported living to the adjoining nursing home when they become ill without exploring other, more independent options. Some advocates assert that because the same corporation owns both facilities, residents can be transferred based upon the need to keep the nursing home census high, rather than upon the service needs of individuals.
The center also identifies lack of outreach and attitudes of medical professionals as barriers to success. The center is not well known among hospital personnel, and many referrals are obtained after the individual has already been placed in a nursing home. Mike states that, "The medical community is still not buying into the independent living philosophy, still viewing independence as an option only for super gimps." The center acknowledges the needs to step up its efforts to educate the medical establishment.
While most barriers to success have been external to the center, some internal obstacles have also been encountered. The center has experienced significant growing pains, expanding from a budget of about $300,000 to several million in the last three years. In the past, day-to-day operations of the center, including performance reviews of all staff, sign-off on purchase orders, and other routine decisions, were centralized with the executive director. A management team has recently been structured, and other staff have been given more decision-making authority and responsibility, but the center still needs to become more decentralized. As with most centers, paperwork is a constant source of irritation to line staff.
One final problem is the center's dual role as Medicaid provider and advocate. This causes problems when an advocacy issue arises and the center must advocate with a consumer against SRS. This is confusing for some SRS employees who think that being a service provider precludes being an advocate. A related issue is that home health agencies are beginning to enter the PAS market, and SRS can steer consumers away from the center toward an agency that will advocate less strongly and will place more controls upon consumers. Despite these disincentives, the center has maintained a strong advocacy focus throughout the last several years. The center's credo is, "Maintain competence to allow deviance!"
Evaluation
Formal and informal mechanisms have been used to measure consumer satisfaction. The center has sent surveys to all consumers with positive results. Center staff are currently developing more in-depth surveys targeted to the specific services consumers have received. The center is also scheduling some town meetings to obtain consumer direction on future advocacy activities. Public officials will be invited to hear directly about the issues people with disabilities face in their communities from consumers themselves.
Another measure of success is the increase in demand for center services. The Topeka center currently serves about 500 individuals and provides over 30,000 hours of PAS each month. All of the consumers receiving these services are certified by SRS to be at risk of institutional placement. While the center emphasizes keeping people out of institutions in the first place, it has also enabled 12 individuals to leave nursing homes or state hospitals during the 1994 fiscal year.
Replication
The most important ingredient for any center program is a gut-level understanding of independent living philosophy. Mike states that:
You have to believe in the basic ability and worth of everyone, irrespective of disability. This is how you get beyond all the negative attitudes and medical-model beliefs of other professionals. You must be a true believer and strongly reject all the arguments against independence. Once you become an independent living believer, there are no more barriers, because the real obstacles are bigotry and lack of creativity, not the characteristics of the people we serve.
A consumer-directed PAS program and accessible, affordable housing are also necessary ingredients. Staff must learn to be good "scroungers," knowing where to locate a used refrigerator, couch, or kitchen appliances. A slush fund that can be used to purchase household items is also a plus. A thorough knowledge of Medicaid regulations and consumer rights is essential. Finally, willingness to be a strong advocate, even at the cost of incurring hostility or anger, will make any center more successful.
The hallmark of an effective center is that it can allow consumers the freedom to succeed or fail; this is the value of true independence.
Independent Living Center of Amsterdam
Amsterdam, New York
Introduction
One of the often-repeated legends of the independent living movement is how the independent living centers in New York obtained funding from the legislature in 1986 to open 17 new centers throughout the state. Reportedly, advocates presented independent living concepts in such a convincing, positive manner that every state senator wanted one in his or her district. Republican senators agreed to vote for appropriations to cover the expansion, as long as a center would be located in his or her area.
During the first several months after the appropriation passed, requests for proposals (RFPs) were issued to establish 17 ILCs designated to serve rural and underserved portions of New York state. The local affiliate of United Cerebral Palsy (UCP) responded and received the grant. The organization had little knowledge or experience with the independent living movement, but Bonnie Page, the new center director, learned about consumer control and core services quickly. The UCP grant was awarded with the stipulation that the center must become a separate non-profit organization with a board of directors 16 months after funds were awarded. On July 1, 1988, the Independent Living Center of Amsterdam (ILCA) became an official center for independent living.
ILCA serves a population of just over 100,000 at the foothills of the Adirondack Mountains in one of the most scenic areas of New York state. The center's service area covers Fulton and Montgomery counties and is divided almost equally between small towns and agricultural areas. Services include peer counseling, skills training, individual and community advocacy, information and referral, community education, technical assistance on access, equipment loan, and limited accessible transportation. ILCA operates with 15 staff and an annual budget of $750,000. Additionally, nearly $1 million passes through the center to pay thirteen family care providers who support consumers with severe mental disabilities in the community.
Project Initiation
ILCA's efforts to assist institutional residents to live in the community stem back to a class action suit filed against the New York Office of Mental Retardation and Developmental Disabilities (OMRDD) by parents of youngsters forced to endure the inhumane conditions at the Willowbrook State Hospital. This lawsuit, filed in 1973 on behalf of the 5,400 residents of the institution, resulted in a consent decree calling for the closing of Willowbrook and placement of the residents in community settings by 1982. While the goal of closing the institution was not achieved until 1993, the consent decree resulted in a number of innovative programs during the late 1970s and early 1980s for placing severely retarded and physically disabled citizens in community settings. By 1982, roughly half of the former Willowbrook residents lived in the community, many in group homes with fewer than six residents or in foster homes (Rothman & Rothman, 1984). Others, however, were "dumped" into developmental centers established in the mid 1970s as transitional programs to take people out of large state institutions. Newer and smaller versions of institutions, the developmental centers warehoused hundreds of people and provided little more education and community integration than the institutions they replaced. A consumer advisory board for the Willowbrook class, those in the institution at the time the suit was filed, currently ensures that the former residents receive the level of services and oversight to which they are entitled. The majority of people with MR/DD, however, receive no such protection.
Services for most people with DD are overseen by the 13 Developmental Disability Service Offices (DDSOs) located throughout the state. The DDSOs operate as the local arm of the OMRDD. These offices have a great deal of latitude with regard to how people in local communities are served. Most offices try to place people in small group homes or family settings and are quite protective of the individuals they serve.
Shortly after July 1988, ILCA began participating in a minority regional network sponsored by the OMRDD. The purpose of the network was to build and to improve services and programs for multicultural communities across the state. Each network consisted of human service providers and other interested persons who advocated for services for the minority groups with DD in their geographic area. ILCA was quite concerned about the treatment of minorities, especially African Americans and Hispanics. A major problem at the regional developmental centers was the inability of staff to respond to basic communications, such as a request for water, from Spanish-speaking residents. This tragic lack of communication often caused residents to engage in what professionals label as "maladaptive behaviors" and resulted in use of "behavior management techniques" or punishment.
ILCA learned about OMRDD's family care program which was charged with placing people with severe mental retardation and DD in foster homes. They viewed the program as a viable option for community placement of these residents and approached the DDSO about starting a family care program in the Amsterdam area. The DDSO resisted at first, based upon the belief that the developmental centers residents were too severely disabled for integration in a family care setting. ILCA appealed to the commissioner of OMRDD, who approved the program. The center initiated a family care program, known as "Project Rainbow" or "Proyecto Arcoiris,"-- a bilingual, multicultural program to place people from developmental centers and other settings into integrated communities.
Services
Project Rainbow matches people with severe disabilities who cannot live on their own with foster families willing to provide personal care and other supports. The individual can live with the family care provider or can live independently in close proximity, for example, downstairs in the family house. The majority of consumers in this program had been labeled profoundly or severely retarded and were rejected by group home providers as "too severely disabled" for their respective programs.
After obtaining approval from the OMRDD to start the program, the center began to establish relationships with the developmental centers and the DDSO. After the commissioner of OMRDD gave these organizations a directive to refer individuals to ILCA, a few residents began to be referred, especially Hispanic and other hard-to-place individuals.
Today, ILCA recruits families by placing advertisements in the paper, by appearing at area events, and by spreading the word in the community. Persistently high unemployment rates, coupled with the chance to earn some money and to make a positive contribution to the community, provide incentives for families to join the program. Introductory training sessions feature Latin food and music along with information about the family care program. Participants are quite enthusiastic by the time of the second training session, held both in English and Spanish. Center staff take families to the developmental centers to meet the resident, then bring the resident to the family home for several visits of increasing length. Staff drive the resident to and from the family's home and remain available by telephone and beeper to handle emergencies. If the final visit of one full weekend is successful, the resident moves to the family home. The center also assists the family in making the home physically accessible when needed.
ILCA staff supervise the 13 certified family care providers, and are available 24 hours a day to handle crises. A program coordinator, two service coordinators, and a nurse staff the project. The service coordinators arrange social services and offer ongoing support to the families. A registered nurse coordinates and monitors health care, locating physicians who will accept Medicaid payments and advocating to insure that physicians will serve consumers with significant disabilities. Bonnie Page, ILCA executive director, acts as the Social Security representative payee for the consumers. Each consumer also has a volunteer advocate, an individual recruited from the community to take an independent look at the services the consumer receives and to make recommendations to the center.
The program currently serves 22 individuals, 17 from the developmental center and five from the community. Three consumers are legally blind, two are hearing impaired, one has Downs Syndrome, one has Apert's Syndrome, and 15 are multiply disabled. Six consumers are Latino, one is African American, and 15 are Caucasian. Three consumers are under the age of 25, nine are between the ages of 25 and 60, and ten are over 60. The following are examples of consumers served in the program.
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An African American male with developmental and psychiatric disabilities kept running away from a New York City psychiatric center. He currently lives with a family care provider and has not run away for two years.
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The mother of a young woman who is deaf-blind as a result of rubella was no longer able to provide adequate care. She was worried that her daughter was in danger of being institutionalized. Two years ago, the daughter moved to a Latino ILCA family care home in another borough. As the mother wishes to see her daughter every three months, ILCA staff provide transportation to the mother's home in Brooklyn.
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A woman with mental retardation who never received any education or training was dropped off at an emergency room after her mother died and her father became too ill to provide care. A month later, she was placed in an ILCA family care home. She participates in a day program and enjoys camping, picnics, and shopping with her new family.
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A young man with mental retardation and epilepsy was once kept drugged in his room while the people with whom he lived stole his SSI check. He later received medical care and treatment and became involved in the family care program.
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A non-verbal "profoundly mentally retarded" resident of the developmental center had serious behavior problems. When he started making visits to a Latino family, he began to speak in Spanish and ceased his problem behaviors. Today, he watches Spanish TV, enjoys dancing the Mambo, and appreciates Latin cuisine.
Contacts
The commissioner and staff of OMRDD were important contacts at the onset of the project. At first, the DDSO staff were skeptical, preferring to use more traditional programs. Once ILCA established a track record, staff of the DDSO became primary contacts for the project. The DDSO is very supportive of the center's efforts and consistently refers consumers to the project. DDSO officials now view ILCA as a place where people with few options for community placement can be served. As an outgrowth of contacts with the DDSO, ILCA has obtained funding for Project LEAD, a self-advocacy training program for Spanish-speaking people. Project LEAD provides legal and educational training on how to access U.S. education and health care systems.
Resources
During the first few years, the OMRDD funded services through an annual contract with ILCA. This was replaced by a per diem arrangement supervised by the DDSO. The new arrangement requires close contact between center and DDSO staff. Under terms of the agreement, the center receives about $345,000 per year for service coordination based upon a negotiated daily rate of $42.88 per individual per day. DDSO pays the center monthly based upon the number of consumers and the days of service. The consumers' SSI payments plus funds from the DDSO, are passed on to the family care providers. Each family care provider receives the following payments:
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residential and food reimbursement of $597.48 per month for each resident;
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a differential payment of between $200 and $700 per month to cover PAS and other personal services based upon the quality and quantity of care the consumer requires;
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a residential habilitation supplement of $900 per year;
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a recreational transportation supplement of $120 per year;
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a $500 per year clothing allowance; and
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either $89 or $109 for spending money for the consumer, depending upon whether the consumer receives Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI).
Multicultural Issues
According to Bonnie Page, the project has successfully served people of different backgrounds because multicultural issues were addressed at the program design stage, not as an afterthought. Bonnie speaks Spanish fluently and considers herself bi-cultural. Project staff come from minority backgrounds, and six of the ten center board members are people of color. Because they come from the community, these individuals have a keen understanding of the issues. They can solicit community support and provide direction for the center and the program.
When Project Rainbow was initiated, a major issue was convincing OMRDD that Latino families could responsibly provide care for severely disabled individuals and could abide by state regulations. OMRDD expressed concerns about how these families would negotiate complex educational and medical systems with limited English-speaking skills. This concern was partially addressed by Project LEAD. ILCA has also found it necessary to work with certain families on cultural expectations, such as making and keeping appointments.
Barriers
Initially major barriers to the success of Project Rainbow were related to the heavy financial reporting requirements and standards imposed by OMRDD, generally much more complex than reporting requirements for independent living funds. ILCA was compelled to develop employee and financial policies and procedures manuals and to replace the bookkeeper with someone who possessed advanced accounting skills. The DDSO provided technical assistance as the center adjusted to these new demands. According to Bonnie, "The learning curve was steep, but in the long run the new procedures were beneficial for the center."
The local chapters of the ARC (formerly Association for Retarded Citizens) constituted another barrier. A major employer in the area, the ARC felt threatened by ILCA's approach and by the potential loss of both power and jobs that successful implementation of the family care program might bring. The ARC chapters saw themselves as the providers most capable of serving the DD population and certainly the major provider of day programs for many consumers. These programs, including day treatment centers and sheltered workshops, remain segregated and have few bilingual, bicultural staff. The divergence in philosophy between the ARCs and ILCA causes confusion for consumers and family care providers alike. The center is currently exploring the possibility of developing its own integrated community-based day program, but a separate proposal with individualized services for each person would need to be written and submitted to the DDSO.
Another barrier to the project's success was the feeling of some New York independent living centers that provision of this level of concentrated service and the necessity of meeting medical requirements, such as providing a staff nurse, were antithetical to the philosophy of independent living. Bonnie responded that assisting people with the most significant disabilities, especially those with no other options, to live in the community should be the mission of centers. She added that, "Unfortunately, people with severe developmental disabilities are not being served by many centers."
Evaluation
Each month, ILCA staff visit the consumer in the family care home to provide oversight and address any problems. If one of the consumers has had an accident (for example, has fallen out of bed), an incident review team, consisting of two center board members and the executive director, would contact all relevant personnel and send a written report to DDSO. DDSO would then request additional information from the center as needed.
In addition, an annual evaluation is sent to volunteer advocates, consumer family members, and family care providers with detailed questions about possibilities for increased independence, satisfaction with services and placement, and quality of life. When possible, the consumer is also interviewed. Concurrently, OMRDD thoroughly evaluates the center to gauge compliance with federal and state regulations, financial and accounting procedures.
Replication
According to Bonnie, ILCA board and staff find Project Rainbow rewarding because it enables the most severely disabled people--people often denied services by other agencies--to live in the community. An important finding is that behavior and skill changes are more closely related to the setting than are the individual capabilities of the consumer.
Intrinsic to the success of this multicultural program is the presence of staff and board members from the various communities the center is attempting to serve; involvement of community representation has been very effective in drawing people into the program. Board and staff members well connected in the communities served provide essential advice on breaking down community barriers. Having brochures in both English and Spanish also sends a message of inclusion. Multicultural events with ethnic food and music also serve to break down social barriers.
A center should also recognize that administration of this type of program will be a challenge and should obtain additional resources and expertise before project initiation. Board and staff should request in-depth information about administrative requirements from sponsoring agencies and should visit similar programs to observe record keeping systems. Center staff must be prepared to spend more one-on-one time with each consumer and sponsoring family, taking emergency telephone calls at night or on weekends. The center also must be prepared to fight with the developmental center or other traditional agencies to release people under agency control. The most important principle, however, is that everyone deserves a chance to live in the community, and that centers are in an ideal position to offer these opportunities.
Independent Living Resource Center
San Francisco, California
Introduction
The Independent Living Resource Center (ILRC) began in 1976 as a program of United Cerebral Palsy and was incorporated as an independent non-profit organization in 1979. During the last 20 years, the center has grown to serve the city and county of San Francisco with a budget of approximately $600,000. The center's 18 staff serve a cross-disability population of 2,000 consumers annually; about 45 % of consumers have psychiatric disabilities, about 28 % have physical disabilities, and the rest have other impairments.
The center offers several innovative programs in addition to core independent living services, including outreach to the Latino, Chinese, and deaf populations. Other activities include workshops on self employment, assisting with SSI Plans to Achieve Self Support, matching personal assistants to employers with disabilities, housing discrimination counseling, and ADA-related technical assistance.
Project Initiation
The Independent Living Resource Center became interested in serving people with psychiatric disabilities in 1984 when they heard about a group of psychiatric survivors interested in planning a consumer conference. The center supported the group, which organized volunteers from day treatment centers and half-way houses to plan the conference. Entitled "Consumers Speak," the conference brought together psychiatric survivors from the San Francisco area to discuss common issues and make recommendations to ILRC for a new program. The consumers also formed "San Francisco Network of Mental Health Clients." ILRC was fiscal agent for this group, which was initially funded by foundation grants.
ILRC's program that grew out of the conference was Building up Independent Lives with Determination (BUILD). It was initially funded by Title VII funds designated to reach underserved populations, later supplemented by foundation grants. The program included a director, an assistant, and a benefits counselor. Project staff provided peer counseling, independent living skills training, and other services for people with a psychiatric disability.
Services
Once the staff were hired, the program director contacted the day treatment centers and half-way houses to explain ILRC's new program. She conducted independent living skills training workshops upon request on a variety of subjects. The most successful workshops were those that were unlikely to be provided by professionals, such as "Healthy Ways to Decrease or Eliminate Medication." These workshops created further enthusiasm about BUILD.
A major component of BUILD's program is the volunteer peer counseling service. About 12 volunteers currently serve in this capacity. Peer counselors are paid $50 per month as a stipend for their work. Some people use the experience as a first step to employment, while others view their service as an end in itself.
The peer counseling training is offered twice a year, during three-hour increments on Friday afternoons at the center or in another central location. It consists of 30 to 39 hours of small group discussions, observed peer counseling practice sessions, and presentations from local agencies concerned with drug abuse, suicide prevention, or HIV. The training syllabus includes the following components:
Session I: What Is Peer Counseling? Confidentiality
Session II: Disability Awareness, Independent Living Philosophy
Session III: Self Awareness, Our Limitations, Burnout
Session IV: Stigma, Cross Cultural Views on Disability
Session V: Listening and Attending Skills
Session VI: Paraphrasing
Session VII: Reflecting Feelings
Session VIII: Integration of Skills
Session IX: Understanding Addiction
Session X: Practice Counseling (with Observers)
Session XI: Depression and Suicide Prevention
Session XII: Practice Counseling (with Observers)
Session XIII: Evaluation and Graduation
The program director makes every effort to provide ongoing support and information to peer counselors. Activities include videotaped practice sessions, support groups, and films on disability-related issues. The program director also holds weekly group meetings with peer counselors and encourages them to contact her on an individual basis if they need more assistance. The training is so popular that more trained peer counselors are available than stipends or volunteer positions.
The first peer counseling was provided to residents of an in-patient unit at San Francisco General Hospital (SFGH), where most of the counseling occurs today. Peer counselors visit the hospital in pairs one night per week and work with two or three people per visit. Because hospital patients are in therapy or other treatment most of the day, counseling sessions are generally brief and deal with the nuts and bolts of making the transition from the hospital back to the community. The peer counselor serves as a role model of successful community living. The counselors also offer peer counseling groups in which hospital staff do not attend.
Consumer Profile
Sally Smith (pseudonym) attended a group held on the unit at SFGH. She was particularly interested in resources available in the community to keep her from being re-hospitalized. The peer counselor told her about the co-op where he lived and explained how she could enroll in the program. By the time Sally met with the hospital discharge planner, she had already contacted the co-op program. Her initiative convinced the discharge planner that Sally was ready to return to the community and did not need a more restrictive placement.
The center also operates a cross-disability drop-in center that is quite popular with psychiatric survivors. Contacts there tend to last for an hour and are much more intensive than in the hospital. Consumers of the drop-in center generally use counseling to manage a crisis, such as applying for income benefits, finding housing, or looking for a job. Other consumers drop in to decrease their isolation or make contacts with peers. People on waiting lists for therapy from the mental health system use ILRC's peer counseling to fill the void. A major issue in this circumstance is to make sure the counseling focuses upon a peer exchange, not a therapeutic relationship.
Independent living skills training was initially a major component of the center's services, but it has been discontinued based upon input from consumers. Independent living skills training was already being provided by mental health agencies, who often forced this training upon their clients; this coercion made ILRC's independent living skills training unpopular. The center continues to provide workshops on advocacy issues, such as obtaining income and medical benefits. ILRC continues to work with consumer groups on their advocacy issues as their major form of outreach.
ILRC has also acquired funding to provide housing and employment services to psychiatric survivors. Both housing and employment are needed for people to make a successful transition from half-way houses to independent living in the community. The Peer Employment Program, initiated in 1988 for psychiatric survivors, has evolved into cross-disability workshops on preparation for self-employment. The first housing service was a matching program funded by the City of San Francisco to help people with psychiatric disabilities from half-way houses or hospitals find roommates and share living expenses. Today, the service consists of a counseling program to teach people with any disability how to find their own housing and roommates. ILRC works with the Season of Sharing Program, which provides emergency funds to pay damage deposits, back rent, or buy furnishings. A $5,000 revolving loan fund also helps in meeting emergency expenses. ILRC has also obtained funding from the Department of Housing and Urban Development to assist consumers with housing discrimination complaints.
In 1993, an ILRC consumer obtained funding from the San Francisco City/County Division of Mental Health to open the Office for Self Help (OSH) to provide culturally competent peer counseling services to people of different ethnic backgrounds in the city's mental health programs. The consumer also convinced the director of mental health services to solicit volunteers for peer counseling through the managers of area mental health programs. Training for these counselors is provided by ILRC. OSH also operates a socialization project, where counselors go to board-and-care homes to take residents on recreational outings and arrange a van service to assist family members who wish to visit patients at psychiatric hospitals outside the city.
Since the initi