- Individualized Services in New York State: An Introduction
- Principles for Individualized Services
- Selected Resources on Individualized Supports
- The Story of Onondaga Community Living
- Orleans County Arc
- Wildwood Programs
- Warren-Washington Arc
- Franklin County Arc
- From Brooklyn to Syracuse
- A Home to Call My Own
- Issues and Challenges in Developing Individualized Services
- Selected Resources and Reports on Community Integration
- Promising Practices Search
by Steven J. Taylor
Just a few years ago, one would have been hard-pressed to find positive examples of individualized services for people with developmental disabilities in New York State. While New York has ranked as one of the nation’s leading states in the depopulation of public institutions, this occurred primarily by moving people into relatively large facilities in the community. From 1980 to 1993, the number of people living in New York’s developmental centers declined sharply from 15,140 to 4,307 (Mangan, Blake, Prouty, & Lakin, 1994). Yet as other states began to support individualized services during this period with funding from the federal Medicaid Home and Community-Based Waiver, New York continued to develop traditional alternatives such as relatively large community residences and Intermediate Care Facilities for the Mentally Retarded (ICFs/MR).
Beginning in the 1990s, successive Commissioners of New York’s Office of Mental Retardation and Developmental Disabilities (OMRDD) expressed a commitment not only to deinstitutionalization, but to the development of individualized services as well. With support from the Medicaid waiver and state resources, OMRDD began to expand family support services and provide flexible funding for individualized supports.
Change in a state as large and complex as New York is bound to be slow. OMRDD has promoted individualized services (the “Individualized Services Environment” or “ISE”) as a philosophy, but state regional offices (“DSOs”) and voluntary agencies do not share a common understanding of this new direction. Many of the services developed by state and voluntary agencies through new OMRDD individualized services initiatives parallel traditional models, albeit somewhat smaller than existing facilities. In many cases, state and voluntary agencies have not established safeguards for individualized services to replace traditional licensing and certification procedures.
Yet on a small scale and in increasing numbers, agencies in New York State are exploring innovative approaches to supporting families and assisting adults with developmental disabilities to live in their own homes. Many of these efforts have been undertaken by relatively small private agencies. For some agencies, the development of individualized services for some people has resulted in a critical examination of all of their services. For other agencies, individualized services take their place within a continuum of otherwise traditional services.
This bulletin describes some of the most innovative examples of individualized services in New York State identified during a statewide search by the Center on Human Policy. None of the agencies or services described in this bulletin is perfect. However, each of these services described here can provide a positive example for agencies interested in pursuing more responsive and individualized ways of supporting people with developmental disabilities in the community.
Mangan, T., Blake, E. M., Prouty, R. W., & Lakin, K. C. (1994). Residential services for persons with mental retardation and related conditions: Status and trends through 1993. Minneapolis: University of Minnesota, Research and Training Center on Residential Services and Community Living, Institute on Community Integration (UAP).
by John O’Brien
This is based on the discussions at a conference sponsored for OMRDD by the Center on Human Policy in July, 1994.
- Assist people with developmental disabilities to develop their individual abilities and personal interests
- Discover and respond to individual choices
- Support important personal relationships and encourage positive participation in community life
- Deal effectively with people’s vulnerabilities
- Promote personal and organizational learning which leads to continual improvement of service provider ability to make these four essential contributions
Like other citizens, people with developmental disabilities find security and joy in the love of family and friends, meaning in contributing to community life, pleasure in participating in interesting activities, and personal development in the search to discover and develop their talents and abilities.
The life-long need for competent assistance with the individual effects of disability and the pervasive effects of prejudice make people with developmental disabilities especially vulnerable, and this vulnerability is often compounded by the effects of poverty, community breakdown, and discrimination based on cultural differences.
Committed respect for the dignity and rights of each person with a developmental disability requires willingness to get to know and respond to each person as a changing individual. The way to gain this vital knowledge is to attend carefully to each person’s interests, preferences and choices, and to join each person in creating positive opportunities to pursue them. Some people will challenge our ability to understand their interests and choices, and some people will challenge us to understand and respond to their positive potentials despite dangerous or difficult behavior. But by far the greatest challenge to the current service system is utilizing available resources in ways that respond effectively and flexibly to each person’s individual requirements for assistance in assuming their responsibilities as a citizen and as a community member.
Offering people with developmental disabilities decent living conditions and reasonable opportunities calls for significant learning and major change at every level of our service system. We must contend with:
- massive past investment in programs and administrative structures whose mission was to oversee and control groups of people with developmental disabilities
- rapid growth in knowledge of how to best serve people with developmental disabilities
- the large scale of our service system as a whole and the size and organizational complexity of many service providing agencies
- feelings of helplessness at the magnitude of our task, or cynicism about our capacity to deal with the conflicting interests that shape our services, or pessimism about our capacity to recruit and retain decent and able people to provide services.
To continually improve our capacity to support people with developmental disabilities, we commit ourselves to the disciplined application of the following questions to all of our activities from assisting people with their daily routine to long range planning for the service system as a whole. If we are disciplined in applying these questions, we will identify problems worth solving and solutions worth implementing. In consequence of this, we will steadily increase investment in activities that prove effective, and discover growing satisfaction on the part of people whose expectations for themselves is rising.
- How does this activity increase our capacity as service providers to assist people’s development?
- How does this activity increase our capacity as service providers to discover and respond to individual choice?
- How does this activity increase our capacity as service providers to support important personal relationships and to encourage positive participation in community life?
- How does this activity increase our capacity as service providers to deal effectively with people’s vulnerabilities?
- How does this activity increase our capacity as service providers to continually improve our ability to assist development, respond to choice, strengthen important relationships, and deal with risk?
O’Brien, J. (1994). Down stairs that are never your own: Supporting people with developmental disabilities in their own homes. Mental Retardation, 32(1), 1-6.
O’Brien, J., & Lyle O’Brien, C. (1991). More than just a new address: Images of organization for supported living agencies. Syracuse: Center on Human Policy.
Racino, J. A., Walker, P., O’Connor, S., & Taylor, S. J. (Eds.). (1993). Housing, support, and community: Choices and strategies for adults with disabilities. Baltimore: Paul H. Brookes Publishing Co.
Taylor, S. J., Bogdan, R., & Racino, J. A. (Eds.). (1991). Life in the community: Case studies of organizations supporting people with disabilities. Baltimore: Paul H. Brookes Publishing Co.
Change is complex. It is commonly assumed that change happens– and, in fact, can only happen–from the top down. The assumption is that if the right laws, regulations, policies, or funding mechanisms are put into place, then changes will occur for people with developmental disabilities and their families. Of course, these things can make a difference. If regulations and policies encourage segregation or if funding mechanisms only pay for institutions and congregate settings, then it is unlikely that people with developmental disabilities will have the opportunity to participate in community life.
Yet top down approaches have severe limitations in bringing about changes in people’s day-to-day lives. Nowhere is this more apparent than in the case of “individualized” or “person-centered” approaches for supporting people with developmental disabilities. Many states have recently adopted policies and funding mechanisms to support new individualized approaches such as “supportive living” or “family-centered supports.” In many cases, however, these new service approaches bear a striking resemblance to traditional models. For instance, small group homes may be referred to as individualized services. New policies are not enough.
Bottom up change strategies are also important. We need good examples of truly individualized and responsive services and descriptions of how these services are experienced by people with developmental disabilities and their families. By documenting good examples, we can differentiate between new and traditional approaches. When good examples are clearly described and publicized, they can have an effect far beyond the specific people served and contribute to change in subtle, but significant ways. This is why the Center on Human Policy has invested considerable time and resources in individual agencies that may serve a relatively small number of people.
Most recently, the Center has been involved with an agency called Onondaga Community Living in Syracuse, New York. In the following article, Pat Fratangelo, Executive Director of OCL, tells the story of the agency.
We started to work with OCL as part of a collaborative effort with New York’s Office of Mental Retardation and Developmental Disabilities to provide technical assistance on statewide policy and specifically institutional closure. OCL was not selected at random. We knew a bit about OCL before we targeted the agency for indepth assistance. Everything we knew about OCL was consistent with what we have learned about the characteristics of innovative agencies.
First, OCL is a small agency; it supports 30 people with developmental disabilities and employs 40 staff. By virtue of its small size, OCL can undergo agency-wide change much more readily than large bureaucratic agencies. In addition, the small size of the agency encourages personalized and responsive services. Administrators are not separated from the people served by multiple levels of organizational structure, but know them on a personal level. An agency cannot be “person-centered” unless it is personal.
Second, OCL is characterized by strong and committed leadership. When Pat Fratangelo took over the position as Executive Director of the agency in 1990, OCL was a relatively traditional group home provider. Pat brought to the agency not a commitment to any particular model of service, but a set of values that stressed the importance of putting the person before the program. Before long, these values led to an open questioning of the future of OCL’s group homes.
Even today, neither Pat nor anyone else associated with OCL talks about closing all of the agency’s group homes. But we predict that the day will come–and sooner, rather than later–when OCL no longer operates group homes, simply because the model is inconsistent with the fundamental values that the leadership and board of the agency have espoused. Of course, as this happens, it will simply represent a new beginning, and not the end of the story.
One of the characteristics of a good leader is to downplay leadership and spread the credit around to staff, board members, and others. OCL’s leader shares this characteristic.
Finally, OCL has a board and planning committee that has been open to change and to struggling with the uncertainties it brings. A committed leader is necessary, but not sufficient for agency change; more than a few committed leaders have had their efforts thwarted by resistant boards and committees. Many of the board and committee members associated with OCL are parents of people with developmental disabilities. For some of these parents, the prospects of change have not been easy. Just as institutions represented security to the past generation, group homes represent security to many of today’s parents. It has taken courage for the parents associated with OCL to set aside their own concerns to ask what is best for their sons and daughters and to trust that OCL will be there for people in the long run.
Like many states, New York is in a process of fundamental change. Many important changes have already occurred in policies and funding mechanisms. Real change in people’s lives will happen one person and one agency at a time. From this perspective, OCL’s story needs to be told and listened to.
The Story of an Organizational Change:
Onondaga Community Living, Inc.
Patricia Fratangelo, Executive Director
Onondaga Community Living was developed in 1987 by a group of concerned citizens in Onondaga County who wanted a greater array of services and supports to be available to those with developmental disabilities within this county. They came together as a voluntary board of directors and made the commitment to develop a supervised residential service for as few people as they could afford economically. Their commitment was to quality, and they saw that could only come with a small number of people. Out of their dedication and commitment, the first 6-person group residence was developed, and within the next 3 years two more 6-person group living arrangements were also developed. The agency also began to see the virtues of the people they were supporting and felt that they could benefit from community employment. Thus, supported employment emerged within this agency to support the people within the residences.
Soon after the development of the third group residence this agency began to move toward more individualized services. These efforts began to move the agency from group arrangements to person centered developments. The new people being supported, along with their families and advocates, were beginning to be asked such things as where they wanted to live, who they wanted to live with, what kinds of supports did they really need, and what in community life was important to them.
This began a major turning point within this organization. When these questions were asked most people had something very different in mind from what we were currently providing. That led us to look at different ways of providing supports and supervision and moved us into different types of funding to enable this to happen. The agency now moved to separating services from housing. The people who were being supported now were signing their own leases or owning their own homes. The housing is uncertified which allows great flexibility on behalf of the person with the disability and their family. The supports are now tied to the person and not the property.
To date OCL has 18 people in group homes and 9 people in eight individualized homes. Of the 18 people in the original three group residences, 9 wish to live in a more individualized situation. As of this date we also have proposals in for funding of an additional four people for individualized services.
We are struggling with what to do with the vacancies that occur as people move out of the residences. After listening to the people who lived at one of the group residences and working with the families, it became apparent that each of the six people wanted to move out of this arrangement into places of their own. This would require us to look very differently at how each person would be supported through OCL, as they require various levels of support and supervision. After a summer of struggles and education with the Board of Directors, the board voted to support the individualization that each house member wanted, and rather than filling the vacancies within the house we would work to divest ourselves of this group living arrangement. This decision came after a lot of discussion, training and soul searching on behalf of the board members. At the beginning of the summer board members were leaning in different directions on the issue. By the end of the summer of 1993, with the support of leaders in the field, all but two members voted positively toward the individualization and the closing of the residence. Thus, a major change in the organization occurred, firming our commitment to person driven approaches, thereby recognizing that the group residence was in conflict with both our mission and the personal directions of each member within that house.
CREATING COMMON GOALS AND VISIONS
In order to provide individualized supports, it is important that the staff, the board and the people who are supported, with their families and significant others, share common goals and visions. The struggle from going from a systems centered to a person centered approach, and from a group living arrangement to individualized and diverse services is real and at times difficult. This is readily acknowledged and discussed. We have gained confidence and have become more critical over time through our own experience. We have also actively been involved in learning from the experiences of others. They needed to feel secure with their decision and could only do this by talking with and learning from others.
The board is not the only crucial piece in the organizational change. Families have the opportunity to be heard by the agency and are not pushed into making difficult life decisions about their loved ones. We work to support each individual based on the family’s interests and desires. Training for staff is another critical piece. Staff need to know they are important and are heard. They are the people who are often the closest to those we support. We need to hear their excitement and their fears and work together on reasonable solutions to difficult issues. We work to identify the worries and concerns as we move through the planning and from this learn more about the safeguards that are necessary to make life more successful for the person. The importance of team meetings, board and staff retreats, learning from others and solidifying the organizational mission has done much to help us through this change process.
STRUGGLES AND DILEMMAS
Being recognized for our person centered approach is a blessing and a curse. For if we are to really remain as person centered as we are, we cannot do this for large numbers of people. We hope that by dedicating ourselves to those we are currently supporting, we will be dedicated to enable each person to live the life they want. As Jay Klein put it, we will be helping people to “have their lives back”–a life of their own, not the life of the system. We continue to question the issue of size and quality and realize that quality is depleted when the numbers grow larger. Yet on the other hand we again and again talk with families that are feeling crushed and frustrated by the system. Their issues may not seem difficult to us. So what is our role then? To take in more and more people, or to help them advocate for the services they really need with other organizations that should be able to mold themselves to meet the needs of a person? We also have the pressure of the closure of the local developmental center. What is our role with all of that? What can we really do to aid in the closure while continuing to ensure the personal commitment and quality for the lives of those we currently support?
The issue of planning for effective safeguarding is very real in each situation we plan for. We see that individual situations can be very fragile if not supported in the right way. Because individualization for people with 24-hour needs is relatively new in New York State, the experience has not yet materialized on the safeguards necessary. A house mate leaving could prove to be critical if the person requires the live-in support and no other person is yet identified before the house mate moves out. We work to plan for day to day and proactive safeguards such as these in each situation developed. We do this planning based upon each person’s personal needs and personal resources.
Then beyond this we take it a step further to the safeguarding necessary within our organization. We believe that the person’s residence is his or her own and that he or she will remain there no matter what the ups and downs that come with life. It is our belief that with adequate planning and funding availability, many crisis situations could be eliminated.
WHAT WE ARE LEARNING
We have found that by really listening to people and not the system, what works is often not the very system that they are part of. Each person has his or her own life, own desires and own needs. By recognizing these and not the parameters of the system, we have discovered that we must remain flexible and rid our minds of traditional models of support.
We have also discovered that there is a true capacity in the community. By believing in this we have watched and supported people to become a true part of their community with true community members for friends and support. We have watched and supported people to become volunteers at local groups and associations. We have enabled people to become a part of their community churches. But more importantly we have watched for the interests and magic that occurs as people begin to get to know one another in the community. We watch the spark get started and nurture and support the new found relationships. By supporting the relationship and not the person with the disability we have experienced the development of true friendships and support between the people we support and the members of the community.
We see ourselves on a journey through life with the people we are supporting. As they move down the road and hit the potholes and dead ends we see it as our role to support and guide them through it. We see ourselves as standing with people, not standing over or away from them. The nice part of all of this is that life is ever changing and you never really know where the path might lead to next. There is really no expectation, no model that is needed to conform to. Life is the guide and it is different for everyone.
Parent Support Program
Located in a rural part of Western New York, The Orleans County Arc parent support program assists 22 families having a parent with a disability. Many of the children also have disability labels. One of the parents is Jeanne, who has a 6-year-old son, Danny. After leaving her boyfriend, they had moved in with Jeanne’s mother, but that situation was not working out very well. Staff from the Arc first assisted Jeanne and Danny to move into one of the agency’s supported apartments with another parent and child from the parent support program. Eventually, Jeanne decided she wanted to move and rent her own apartment. She receives support from one of the agency’s “community support assistants” with things such as parenting, budgeting, cooking, and shopping. For Jeanne, this support averages about 5 hours per week, though the agency does not set a specific maximum limit to these hours. This staff person has also accompanied Jeanne to school meetings with Danny’s teachers and to court hearings regarding custody of Danny, which have always come out in Jeanne’s favor.
Another parent is Kristen, who was living with her daughter Michelle, her boyfriend, and some of his relatives. In this situation, she had responsibility for caring for a number of other children in addition to her daughter, including one with multiple disabilities. She was eventually found neglectful by the courts, and Michelle was put in foster care. Kristen has since moved out of that living arrangement. Orleans County Arc staff facilitate visits with Michelle. Staff members feel that Kristen may always need intensive supports in order to adequately care for Michelle. They have thought about options such as open adoption, but found out it was unavailable in New York State. They are exploring with Kristen the possibility of finding a paid roommate to assist her in the care of Michelle. Overall, agency staff are committed to doing whatever they can to help Kristen and Michelle stay together in a well-supported way.
In their work, staff members place priority on the development of strong, trusting relationships with the people they support. These relationships are formed based on their close involvement in people’s lives–an involvement characterized by emotional connection and closeness versus the detachment traditionally associated with professionalism. Agency staff work closely with generic service agencies, such as the Department of Social Services, assisting them to better support people with disabilities. Finally, staff members spend time together supporting each other–sharing struggles, dilemmas, and successes, and brainstorming further strategies to better assist people.
ORLEANS COUNTY ARC
Individualized Supports for Adults
Jeff, in his late 40s, and labeled as severely mentally retarded, lived with his father in a small village in Orleans County. Here, Jeff was seen as a member of the community, knew many people, and had particularly close relationships with the woman who lived next door and with the minister of the church across the street. After his father’s death, the agency used the Medicaid waiver to pay the neighbor to provide live-in support for Jeff. In Peter’s case, after his mother died, the agency paid for in-home support for Peter’s father to help him keep Peter at home. Jeff has since died, and Peter has moved into an apartment. However, the initial support at home for both men helped to prevent further trauma and separation from familiar people and surroundings at crisis points in their lives.
Family Support Cooperative
Wildwood, located in the metropolitan Albany area, received a grant from the Office of Mental Retardation and Developmental Disabilities (OMRDD) to increase the capacity of families, who would otherwise seek alternative living situations, to support their children at home. In addition to this goal, Wildwood Programs wanted this to be a family controlled effort. Therefore, they selected six families, representing differing needs as well as leadership potential, and helped them to form the Family Support Cooperative. Given full responsibility for a budget of $12,000, the parents developed a charter to guide them in meeting the needs of each family. They agreed that priority should be given to keeping their children at home and involved in their communities, and that this be accomplished as much as possible through generic services. It was decided that for the first year, 1993, the money should be divided equally among the families. They identified a list of expenditures that do not require prior approval. If a family has a need that does not fit the predetermined categories, approval can be granted over the telephone by other Coop members. The only paperwork involved is submitting vouchers or a statement of their expenditures. Families are pleased with this arrangement and feel they are getting their needs met. Wildwood views the Family Support Cooperative as an opportunity to shift from their role as a provider to that of a facilitator.
Melissa used to live in a group home, and the possibilities of having her own place had not been considered because of her “dangerous seizure disorder,” with as many as 80 seizures a day, as well as her “aggressive behavior.” However, as a result of person- centered planning, Melissa moved into a house with a support person. In exchange for her support, Annette receives free rent and utilities. The agency pays another staff person to provide back-up and support when Annette is not there. Melissa’s house, a duplex, is in a quiet residential neighborhood, close to where her mother, stepfather, and grandmother live, so they can all easily visit one another.
This Arc operates in Warren and Washington counties of New York, a both urban and rural area. Through use of the Medicaid waiver, this agency has begun developing some individualized supports for people with severe disabilities.
Gail lives at home with her family, with the assistance of them, as well as support workers who come in 32 hours per week. This support is funded through the Medicaid waiver, which more than doubles the hours of in-home support the family was receiving prior to this. The family and Gail determine how many hours of support they need, and on what schedule. In her early 20s, it was becoming difficult for Gail’s mother to lift her and provide personal care. Gail’s mother said it had also become difficult for her or other family members to spend the time doing all the community things that Gail is now interested in doing. So, support staff come and assist Gail with personal care routines, as well as do things at home and in the community with her that she enjoys.
On behalf of the family, the agency has applied for Medicaid waiver funds to purchase a van, hoyer lift, and some other adaptive equipment. Since Gail was young, her family has always talked to her about the idea of some day moving into a group home. Now that there are other options available, they have started thinking about someone she might like to share an apartment with.
Daniel, who is 16 years old and has cerebral palsy, recently moved back into his family’s home. He had moved into an ICF in August 1990 because his family was unable to care for him on their own. He needs physical assistance for things such as eating, dressing, and bathing. Daniel and his family now receive Medicaid waiver services, including: residential habilitation, which consists of a personal care aide for 60 hours per week; case management; home modifications; and adaptive technology, including a computer and conversion of the family van.
FRANKLIN COUNTY ARC
by Pam WalkerLocated in the rural, Adirondack region, this Arc also never developed many facility-based services. In addition to the services described below, the agency is moving people out of group settings into community settings.
The roots of this agency are in early intervention. Agency staff were very involved in lobbying for the legislation to extend services to children ages birth-3 years. Staff now work with nine school districts in their efforts to arrange home-based early intervention services for families. One family who receives such support are the Charbonneau’s, who have two children with severe medical conditions. Staff at Franklin Arc have arranged for in-home services such as speech therapy and occupational therapy, as well as adaptive equipment, such as a computer. Staff have assisted the family to obtain SSI as well as funds for the purchase of special medical equipment. In addition, staff have provided emotional support to the family, as well as advocacy support, in their ongoing dealings with the numerous service providers in their life.
In a state which includes many respite facilities, it is notable that Franklin County Arc’s respite program is entirely community-based.
The respite program serves families through a voucher program in which families receive support in their homes or other community members’ homes, rather than a special respite house or facility. Families are allocated $500 for each child with a disability. If they need more money, it will be made available to them. Parents can hire whomever they want to provide the respite, such as a neighbor or friend, or the agency will give them a list of people in the area who are willing to do respite. The flexibility of this program is significant to meeting families’ needs, both in terms of the available money as well as the way supports are provided. For example, one parent spent some time in Vermont in order for her child to receive therapy; while there, Franklin County Arc paid an agency in Vermont to provide respite.
A PERSISTENT FAMILY AND THEIR INDIVIDUALIZED SUPPORTS
Angie Perez was a single mother of five living in New York City. Eight years ago, she was told to institutionalize her daughter Cassy. Cassy has been in a “semi-comatose” condition caused by smoke inhalation since her family’s home burned in December, 1986. Doctors and human service professionals advised Angie that the “high tech” medical care Cassy needed could only be provided in an institution.
Despite their advice, Angie believed that Cassy should live at home with her family, no matter what her needs. Through persistent efforts to find support, Angie contacted Margaret Mikol, founder of Special Kids Need Involved People (SKIP) in New York and a parent of a child with similar needs. Margaret knew the Commissioner of the Office of Mental Retardation and Developmental Disabilities (OMRDD) was interested in learning about families’ needs first hand and arranged a meeting between her, her Special Assistant, and Angie.
In realizing the immediacy of the situation and knowing she wanted to move from New York City, the Commissioner assisted Angie to seek services in a community that had a commitment and experience in developing individualized services. Based on its reputation, the Syracuse Developmental Services Office (DSO) was approached and agreed to arrange services for the Perez family. Though the agency did not have direct experience in developing services for someone with Cassy’s needs, it did have experience in pulling resources and manipulating funding streams to meet individual’s needs in exceptional cases.
The Syracuse DSO Deputy Director manipulated OMRDD funding and gained support from several local agencies to assist the Perez family to move and establish a new home with Cassy. For example, a church group provided a down payment on their home. Renovations were made possible through family support funds. ARISE, the local Independent Living Center, converted Housing and Urban Development funding to build a wheelchair ramp. Cassy receives 20 hours of nursing care through Medicaid.
Angie has been amazed at what was able to be accomplished. For the past four years, the Perez’s have enjoyed Cassy and their new home in Syracuse. Her room is the family gathering place, whether it is to watch television or catch up on the day’s news.
Angie has also, however, been concerned with the fragility of her situation and is working to get services that lend stability to her family’s life. For example, she would like to own her own home. She would also like to have more dependable nursing care so she can get a job outside of her home.
The Syracuse DSO has continued to listen to Angie and has worked over the past few years to be more responsive to her family’s needs. This is an example of how a group of committed individuals can be creative and pool resources, regardless of the obstacles presented by the service system.
INDIVIDUALIZING A COMMUNITY
LIFESTYLE FOR ERIC
This is an adaptation of an article published in Network, Winter 1993, by the National Training Research Centre in New Zealand.
My journey with Eric started in the summer of 1992. I first became aware of Eric through my job as a psychologist for a state operated agency that provides services to people with developmental disabilities. My supervisor informed me that Eric, who was living in a locked forensic unit of a state developmental center, was determined to be ready to move. He asked me if I would be interested in coordinating a plan around Eric’s move. Looking back now, I realize how little I knew of the magnitude of creating a typical life with someone who had never had one before.
Eric was labeled at the age of seven by a variety of professionals. These labels created a picture of a small boy who was unable to understand, speak properly, or care for himself. His history is long and sad, with many placements within developmental centers, community residences, and correctional facilities.
In August, 1992, I went with my supervisor and a consultant from the local university to meet Eric. We were required to sign in upon arriving and escorted to the unit where Eric lived. The door had to be unlocked for us to sign in as guests to the unit. We were all introduced, and it became apparent very quickly that Eric had a severe speech problem. I determined that Eric could use some sign language and this became the basis of our communication system with each other.
Eric was only familiar with a limited number of possible choices for his future. For example, when we asked, “Where would you like to live?” his response was “group home with Paul and Mark.” It was clear that he had only reflected back what he had been told for many months by the institution staff.
Getting Ready for the Move
The next eight months were spent doing a variety of tasks that would lead to Eric returning to his own home. I arranged for Eric’s initial visits to include seeing the types of places that people lived and the kinds of employment individuals with and without disabilities had. If Eric was to be an active participant in his future choices, he was going to need to know the array of options. Real choices means having the choices available that all other people have, not just what the “system” has to offer.
Where to live and work. Eric visited group homes, supervised apartments, and typical home environments. He also visited supported work sites where an individual works in a typical community setting and has a job coach assigned to assist with learning new tasks. Watching his reactions to the things we did helped me find out where his interests were.
After I understood the type of place Eric wanted to live and work, I then began setting up visits for him to meet people he could live with, and places where he could work. I advertised within the system where I work as well as placing an ad in the local newspaper. We offered free room and board in exchange for teaching a person new skills.
We met a family who liked him but had reservations about living with him because of his history. They decided they wanted to develop a friendship with him. Then, I introduced Eric to two men who were interested in living with him, Fred and Richard. I was most impressed one evening when I came to pick up Eric from Fred’s house to find him playing cards with Fred and his friends. He became one of the guys that evening and loved it. Both men were never part of a “system” and did not think that way. They have been totally invested in creating a typical home situation for Eric and themselves.
The financial mechanism for arranging the home included several components. The primary person, Richard, was being certified as a family care provider. Fred was being paid through the Medicaid waiver program that allows people with disabilities to purchase certain services, rather than accepting an entire package plan such as in a group home. The state agency contracted with a local agency to purchase “residential habilitation” services for Eric at 40 hours per week. In addition, our service plan through the Medicaid waiver included other supports such as back-up and respite people, training monies, and recreation monies. This package of services costs a fraction of what it costs to have Eric living in a locked forensic ward of a developmental center.
Finding a job. Now that the roommate situation seemed like it was getting settled, I began job hunting. Eric had expressed an interest in working in a grocery store. An acquaintance of mine was manager in one of the local neighborhood grocery stores. He was willing to arrange a job interview for Eric. He was very impressed by Eric and hired him that day. He will begin with bagging, and then be introduced to various other jobs.
Arrangements were made to contract with a local agency to provide a job coach who could use sign language. We decided to also request that this agency provide sign language training to all parties connected with Eric.
The final steps. Eric and his roommates found an apartment they liked near his job. He signed the lease with Richard. We obtained vouchers from the state agency in order to purchase furnishings for Eric’s home. This system of purchasing can be quite restrictive as you must only buy items from certain stores and keep within the amount of that voucher. In spite of this issue, we were very successful at making the larger purchases of furniture. Eric made his selections and was involved in the entire purchasing process. His excitement made the entire day worthwhile.
All involved parties, which now included two roommates, two small agencies, two state agencies, a case manager, friends, job personnel, and me, have been meeting regularly to develop ideas on helping Eric in a variety of areas. We have been developing a routine that includes choice making, recreational options, opportunities for building a social life, opportunities for learning new skills such as reading and sign language, and dealing with feelings and behavior. There are no aversive or physical interventions as in Eric’s past. If the chain of events that lead to challenging behavior can be broken by using communication and teaching strategies, then Eric has an excellent chance of being successful. We have created a support group of people who are invested in Eric’s success and feel that we can meet all challenges in a positive manner.
DEVELOPING INDIVIDUALIZED SUPPORTS
As states move toward providing individualized supports for people with severe disabilities, there are a number of challenges that will need to be faced at both the state and local levels:
It is important to build a common understanding of what we mean by individualized. This process of building a common understanding of individualized supports will entail the following:
At the direct service level, providing individualized supports means learning to:
- remain available to people as their interests and needs change;
- continuously increase the effective control people have over the supports they receive and the choices they make in their lives;
- revise and repair supports as people change and as better information becomes available;
- actively negotiate for necessary changes in agency and system practice and policy;
- make the best possible use of available system funds.
At the agency management level, providing individualized supports means learning to:
- match people with developmental disabilities and support people and sustain and contribute to the improved effectiveness of these relationships;
- focus problem solving and active search for community opportunities;
- develop community opportunities such as accessible housing and transportation, recreational opportunities, and jobs
- make available system resources as flexible as possible as opportunities and support needs change and actively negotiating for necessary changes in system policy and practice.
At the system level, providing individualized supports means learning to:
- negotiate common mission, strategies, and mutual accountability among the people and agencies that provide and govern services;
- continuously increase the flexibility and responsiveness of available public funds by creating new ways to insure accountability and new ways to budget and disburse funds.
- discovering and communicating what is possible for people with developmental disabilities;
- promoting learning from action by discovering and disseminating what works and what doesn’t work in providing individualized supports;
- systematically shifting the system’s “center of gravity” from group provision to individualized supports;
- clarify the difference between truly individualized supports and improved versions of traditional approaches.
Significant resources are still being directed toward traditional agency-owned and agency-controlled services for groups of people. Most agencies that are providing individualized supports also direct large amounts of resources into traditional, facility-based services. Proceeding in these two directions at once is incompatible, both philosophically and programmatically. Continued effort needs to be placed on directing increasing proportions of resources into consumer-controlled, individualized supports.
The energy and resources directed toward developmental center closure will divert energy and resources from the provision of individualized supports. In the interest of timely closure, significant numbers of people will likely be placed in settings that are community-based, but not truly individualized. Effort should be made to ensure that these settings are created in such a way that they can be dismantled later (e.g., avoidance of purpose-built facilities and agency-owned facilities). In this circumstance, how many people benefit from individualized supports depends on how effectively service providers and local advocates deal with four key issues: (1) building commitment to organizing individualized supports; (2) redesigning systems and reorganizing patterns of service to provide individualized supports; (3) systematically, and very substantially, decreasing the time elapsed between identification of an individually responsive service activity and the final decision about allocation of DSO resources to provide that service; and (4) managing the closure of developmental centers in a way that frees resources (including leadership time) to focus on developing individualized supports.
As individualized supports are created, it will be important to include people with the most severe disabilities among those who benefit from these services. Many agencies have greatly increased their capacity to provide individualized supports to people with challenging behaviors. There are many fewer examples of people with the most severe disability labels (physical and intellectual) in individualized settings. Agency staff members often feel that inadequate funding rates are the greatest barrier to this. States and local agencies will need to work together to overcome these obstacles and find solutions which enable all people with disabilities to be supported in individualized ways.
Attention should be paid to avoidance of a situation in which agencies are pressured to expand and serve increasing numbers of people. Agency size is a critical factor in the provision of quality, individualized supports. Where necessary, effort should be directed toward the creation of new agencies, rather than pressuring or encouraging already large agencies to grow ever larger.
Person-centered planning is a tool that can be used to aid in the creation of individualized supports for a particular person. This tool will lose its effectiveness the more it becomes systematized and routinized as a way of planning across large numbers of people.
Personal Relationships and Social Networks: Facilitating the Participation of Individuals with Disabilities (1991) by Zana Marie Lutfiyya includes an overview article, three articles which describe the experiences of people with disabilities who have nondisabled friends and are part of a network of people, and an annotated bibliography. (99 pages) $5.15
Materials on Self-Determination (1990) by Bonnie Shoultz, Michael J. Kennedy and Nirmala Ervelles includes an overview article on self-advocacy and an annotated bibliography. (12 pages) $2.00
Making a Move: Advice From People First Members About Helping People Move Out of Institutions and Nursing Homes (1990) by Connie Lyle O’Brien and John O’Brien shares the perspective of about 40 People First members on how People First members can help people moving from institutions and nursing homes. (7 pages) $1.80
Designing Policies in Support of Inclusive Community: Questions for Decision Makers (1989) by John O’Brien asks policymakers to examine the effects of funding priorities and service policy decisions on the capacity of communities to include people with disabilities. (10 pages) $1.95
Signs of Community Building (1989) by John O’Brien summarizes a visit with people involved in community building activities in the Phoenixville-Kimberton area of Chester County, Pennsylvania. (7 pages) $1.80
On Accepting Relationships Between People with Mental Retardation and Nondisabled People: Towards an Understanding of Acceptance (1989) by Steven J. Taylor and Robert Bogdan is a reprint of an article (Disability, Handicap & Society, 4(1), 21-26) that outlines the sociology of acceptance, a theoretical framework for understanding relationships between people with mental retardation and typical people. (16 pages) $3.05
Caught in the Continuum: A Critical Analysis of the Principle of the Least Restrictive Environment (1988) by Steven J. Taylor is a reprint of an article (Journal of The Association for Persons with Severe Handicaps, 13(1), 41-53) which reviews the origin of LRE, analyzes the conceptual and philosophical flaws of LRE especially for people with severe disabilities, and contrasts integration with LRE as a guiding principle. (13 pages) $2.00
Cultivating Thinking Hearts: Letters from The Lifesharing Safeguards Project (1994) by Helen Zipperlen and John O’Brien is an exploration of the rich mix of concepts that arise from and apply to the creation of effective safeguards for lifesharing households (where people with and without disabilities choose life together); a booklet of essays and letters from various perspectives. Available at $1.25 (charge is for shipping only)
Unfolding Capacity: People with Disabilities and Their Allies Building Better Communities Together (1994) by John O’Brien and Connie Lyle O’Brien offers a perspective on community building around and with people with substantial disabilities and explores five commitments that build community. (14 pages) $2.10
Assistance with Integrity: The Search for Accountability and the Lives of People with Developmental Disabilities (1993) by John O’Brien and Connie Lyle O’Brien is a discussion piece, intended to stimulate controversy and dispute, about support for people who rely on service providers for 24-hour assistance. It addresses the field’s concerns about such issues as safety, quality, and the potential for abuse, and calls for major reorganization of the current system of service provision. (50 pages) $3.35
Supported Living: What’s the Difference? (1993) by John O’Brien discusses the differences between supported living and the traditional ways of providing residential services, based on discussions among representatives of supported living agencies. (18 pages) $2.20
Remembering the Soul of Our Work: Stories by the Staff of Options in Community Living, Madison, Wisconsin (1992) edited by John O’Brien and Connie Lyle O’Brien collects 150 stories written between 1987 and 1991 by Options staff who support people with disabilities in their own homes. Their stories effectively communicate some of the qualities that make their work meaningful. (159 pages) $15.00
Supports for Community Living: A Case Study (1991) by Rannveig Traustadottir is a qualitative study which examines in detail the supports provided to one individual with severe disabilities and the role this support in enabling him to become a part of community life. (44 pages) $3.45
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Center on Human Policy
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National Search: Promising Practices In
Supported Living And Choice
Center on Human Policy
The Center on Human Policy, through its National Resource Center on Supported Living and Choice, is seeking nominations of agencies or organizations promoting the full inclusion and participation of people with severe developmental disabilities in the community. In particular, nominations are sought nationally in the following areas:
- Supports for Family Living/Community Living for Children and Adults with Severe Disabilities (e.g., including supports to assist children and adults to move back to the community from institutions, nursing homes, and other facilities)
- Supports for Meaningful Daytimes
- Supports for Friendships, Social Networks, and Neighborhood and Community Connections
- Supports for Community Inclusion for People with Developmental Disabilities who are Deaf, Blind, or Deaf-Blind
- Supports for Postsecondary Education for People with Disabilities, Including Individuals Labeled Developmentally Disabled (e.g., in universities, community colleges, continuing education programs, etc.)
- Supports for Inclusion of People with Developmental Disabilities in Leadership Positions within the Community (e.g., board membership, committees, etc.)
- Innovative Examples of Cross-Disability Collaboration, Inclusive of People Labeled Developmentally Disabled
Across all nominations, we seek examples of agencies and organizations that offer positive examples of supporting people to have control and choice; supporting people within their cultural context; supporting people in large urban areas; and supporting people in rural areas.
For more information or to make a nomination, please contact Pam Walker by phone (315-443-4290), fax (315-443-4338) or by e-mail (email@example.com).
This search is supported in part by the National Resource Center on Supported Living and Choice, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133A990001. Members of the Center are encouraged to express their opinions; however, these do not necessarily represent the official position of NIDRR and no endorsement should be inferred.