"Get A Life!":
A Model For Enhancing the Quality of Life for Adults with Autism and Their Families

Both of us are Professors in the Department of Special Education and Co-Directors of the Beach Center on Disability at the University of Kansas. "A-Dad" always said that one of our major problems is that we "try to put five gallons into a four gallon drum." By this, he meant that we have very few spare seconds or minutes in our lives.

JT is our oldest child. He works at the Beach Center, the research center that the two of us co-direct, and he has his own home and lives with housemates who are his daily caregivers, as we will describe later. JT’s disabilities have been quite challenging. In addition to autism, he experiences significant cognitive impairments as well as a bi-polar disorder that is accompanied by obsessive-compulsive behaviors.

Our second daughter, Amy, is 27, has a master’s degree in social work and works in the area of housing for individuals with low income and disabilities. Amy lives in Michigan and is married to Rahul Khare, her high school boyfriend who is now a resident in emergency medicine. Our youngest child, Kate, is 24 years old and is pursuing her acting dreams in New York City—after double-majoring in Theater and American Studies at the University of Kansas.

That’s our "biological" family. We have found over the years that a number of people have become part of our family through their incredible love and loyalty to us in providing the kinds of support that family members provide to each other. "A-Dad" had a caregiver, Sarah Aldridge, for almost seven years who supported him in the most respectful and responsive ways, attending to his daily needs and providing an authentic friendship. It was obvious to us many years ago that Sarah was, indeed, a member of our family, as continues to be since "A-Dad’s" death. Likewise, JT’s housemates are also part of our family, because they are part of his circle of support on a 24/7 basis. Their names are Laura and Tom Riffel, and they have lived with JT for a year. We have learned over the years that one of the best ways to increase the likelihood of individuals with autism "getting a life" is to capitalize upon the resources and strengths of biological family members and also to "create" family intentionally by inviting into the biological family people who are eager and willing to go the second mile with and for you.

JT’s social relationships were almost always with us and his sisters, with our family friends who included him in family invitations to all of us, and with people who were paid to help or who were receiving some kind of practicum credit for spending time with him. He really did not have people who sought him out as a friend, nor did he have people with whom he initiated shared experiences as friends typically do. We remember vividly the first phone call he ever received; someone called, and we did not know who the person was. It was with great excitement that we roused JT from sleeping (the call was late in the evening, after he had gone to bed). With great excitement we got him up for his phone call, only to find out that it was someone who had called the wrong number. The fact of the matter was that JT primarily lived in the disability world by attending a separate special education class and participating in a city-sponsored recreation program for people with disabilities. In terms of community inclusion, his lifestyle can be generally likened to "riding in the back of the bus."

The most drastic situation for JT occurred when he was completing high school and transitioning to adulthood. At that time the only adult agency in our community offered only sheltered workshops and group homes for adults with disabilities. This was in the late 1980’s, and we knew from our roles in the field of special education about the emerging success of individuals with significant disabilities in supported employment and supported living. For a while we bowed to the predominant view of JT’s teachers that such outcomes were "unrealistic" for him. We had an opportunity, however, to visit Community Services for Autistic Adults and Children (www.csaac.org) in Rockville, Maryland, and our world opened to new possibilities. There we saw people with autism with more significant challenges than JT’s, living and working successfully in inclusive settings. We came back to Lawrence committed to creating a similar opportunity for JT. The problem was that the staff at the high school and the adult service programs thought that we were in total denial about JT’s disabilities and that such goals would be out of the question for him.

Although we realized that extensive changes would be needed in the adult services program, we were members of their board of directors and thought that over time we could create opportunities for JT to have supportive living and supported employment in Lawrence, similar to what was available in Maryland. The problem that we encountered, however, was that it was taking far too long from JT’s perspective. He entered the sheltered workshop and group home when he was 20, and every possible bad result that we ever had feared occurred. Looking back now, we can marvel at the effectiveness of JT’s self-advocacy even though it was carried out in inappropriate ways. He started singling out one individual in the sheltered workshop to hit and choke every time he saw him, and this individual was the son of a state legislator. The rest is history—he was expelled from the program within a very short period of time.

We will never as long as we live forget the last experience of meeting with the agency’s director just as they were expelling JT. We told him that our vision was that JT would be able to have a typical job with job coach support and live in a typical home having valued relationships with his family, housemates, and friends. The director was aghast at what he considered to be a ludicrous vision. Shaking his head, he asked us very pointedly: "What will you do when you fail?" The implication was obvious—he had every anticipation that JT could not possibly "get a life" consistent with the visions we expressed, and he fully anticipated that someday we would come back begging to get on his waiting list and to work our way back up to the opportunity for JT to try the sheltered workshop and group home once again. The good news is that JT and we have not failed at this vision; rather he and we have succeeded beyond our wildest dreams. That’s what we will share with you—what JT’s life is like now and the kinds of supports that make it work so magnificently.

Individualized Funding
Starting in 2000, JT qualified for "individualized funding", which means that he himself receives directly the financial support from the Medicaid waiver that traditionally has gone to adult agencies. Rather than the money being directed to the adult agency which would then have a "slot" for JT in their employment and/or residential program, the money comes directly to JT and his person-centered support team.

Individualized funding is a relatively recent initiative that re-directs funding streams from agencies to individuals in order to promote opportunities for individuals with disabilities and their support teams to "call the shots." In our situation, this means that we do not have to ask permission from an agency for the services and supports that we want or even to advocate with them to get what we really want. Rather, the individualized funding approach uses the following route:

• The money goes from the federal Medicaid agency to the state agency
• Then from the state agency to the local developmental disabilities agency
• Then from the local developmental disabilities agency to a fiscal intermediary
• Then from the fiscal intermediary to JT.

In JT’s situation, the fiscal intermediary is an accountant in our community. This accountant has no background in disability and does not need disability-specific expertise; rather he manages the disbursements for JT in terms of the people we pay to provide support to JT. He attends to the complicated regulations and filings related to taxes, social security, workman’s compensation, etc. and does all of the accounting. JT’s housemates submit a brief request to the local agency, which in turn submits it to him, on a bi-weekly basis, setting out of the hours that various people have worked, and he sends checks to those individuals along with a check to JT to cover his expenses related to obtaining services and participating in the community.

In terms of his own skills, JT does not count money or have the capacity in any way to manage his own fiscal affairs. Through the collaboration of the fiscal intermediary, JT’s housemates, and ourselves, JT receives the benefits of this funding without needing to have the competence to manage the funds himself.

In the United States the individualized funding initiative is picking up substantial momentum. The National Program Office on Self-Determination (www.self-determination.org) at the University of New Hampshire is an extremely helpful resource in terms of getting the latest information on individualized or self-determination funding. They also have links to other rich sources related to this critically important topic. Joe E. Brown once said: "I’ve been rich and I’ve been poor. Rich is better." We paraphrase her expression as follows: "We have done supported living with funding and without funding. Doing it with funding is better."

His current housemates are Tom and Laura Riffel. Tom and Laura are middle-aged and have raised three children who now are all either in college or living on their own. During the early years of having housemates, JT typically had university undergraduate or graduate students. We found that these folks were terrific in many ways—all of his housemates have had particular strengths and gifts that have exceeded our wildest expectations. His last two sets of housemates, however, have been middle-aged couples. Now that JT is also middle-aged, we’re finding that having more stable, seasoned, folks who have "been around the corner" a number of times and who know what it means to truly create a home and not just a house is especially important to him. Tom has retired from a job with the government and is JT’s major support person. He is paid by JT’s individualized funding. Laura is finishing her Ph.D. in special education after a long career of being a special education teacher. They provide JT’s core support in terms wake-up/dressing routine in the morning, meals, over-seeing his very busy weekly schedule (see Table 1), and coordinating the "comings and goings" of the many friends and support people who are part of his life.

Laura and Tom do not perceive of themselves as JT’s "staff", and neither JT nor we have that perception. They are housemates, and, yes, they provide far more support than housemates typically provide when people do not have disabilities. We have very much sought to have the kind of relationship or connection that is not hierarchical or controlling. Unlike group homes, they do not provide support on a shift basis. It is their home, too; and they enjoy the daily/weekly rhythms of living there along with JT.

We have set up an arrangement so that Tom and Laura provide the major support during the week but some of JT’s individualized funding is used to pay other support people on the weekend. (Because of the lay-out of the house, Laura and Tom can have privacy on the weekends without needing to leave their home.) This gives Laura and Tom a break and prevents them from becoming exhausted or burning out in terms of support provision. JT has a number of great weekend support companions, including two of Laura and Tom’s adult children, Bryan (37 years old) and Jessica (21 years old).

During our experiences over the last 13 years with housemates, the average length of stay has been 12-18 months. It is important to note, however, that it has only been in the last three years that we have been able to pay housemates. Prior to JT’s receiving individualized funding, we provided rent and utilities free to housemates, but we were not able to pay additional money. In terms of the length of stay, one exception was a couple who stayed four years. Laura is finishing her Ph.D. program and has accepted a position in Georgia, so, she and Tom will be moving there in the next couple of months. We are delighted that their son, Bryan, who has spent many weekends with JT will be moving in after they leave. Unlike anything that we have ever experienced before, Bryan has expressed the expectation that he would like to make a life-time commitment to JT. Music to our ears! How many families yearn for long-term commitments! Neither Bryan, JT, nor we know exactly how this will work out, but we eagerly embrace Bryan’s arrival and hope and pray that, indeed, Bryan and JT will be linked from now on. Like most parents, our greatest hope is that JT has loving and competent support, especially when we die and are no longer here to oversee his support and make sure that it meets quality standards.

JT is capable of working more than 20 hours a week. We have been giving some consideration to JT starting a concierge service in the afternoons. This would involve JT having arrangements with a number of individuals, probably starting with co-workers, through he and his afternoon support person would do the tasks that others need to get done but don’t have time to do—grocery shopping, taking and picking up laundry, mailing letters and packages, shopping for gifts, taking their car to be serviced, etc. We believe this would give JT an opportunity to earn more income, help his friends, and have more productive afternoon activity.

In addition to paid work, JT could also do the concierge services on a volunteer basis for co-workers and other friends who are especially supportive to him. He now participates in our community’s Meals on Wheels program one day a week. He and Tom deliver food to 3 individuals, which is a very enjoyable activity for JT. Additionally, it’s a way for him to "give back" to other people and to the community at large. When Bryan moves in as his roommate later in the summer, one of his visions for his experiences with JT is for them to spend much more time doing community volunteer work. It is obvious that JT very much enjoys helping others, and we believe this is an excellent way for him to be productive and make contributions.

We believe we are extraordinarily fortunate to live in a college town in the midwest that is a prime context for "Cheers Connections." Lawrence is a community of about 80,000 individuals and is the home of the University of Kansas, which has about 25,000 students. We have lived in Lawrence for 22 years, and our greatest resource is the extensive friendships we and JT have with people across all sectors of the community. We would not possibly in our wildest dreams think about moving from Lawrence at this point because JT has such extensive "Cheers Connections" that we know that there is always an invisible safety net of support, assistance, and caring throughout all of the environments in which he frequents in his extremely active life.

Several of JT’s particular "Cheers Connections" are the Jazzhaus, Plymouth Congregational Church, concerts in the park, bakeries, and countless restaurants. It is especially important for JT to have "Cheers Connections" because, given the nature of autism and his bi-polar disorder, we’re never quite sure what’s going to happen at any particular time and any particular environment. He sometimes gets into challenging situations, and because he is a "regular," the other regular patrons know exactly what he needs and when he needs it, and they step forward to provide that support without ever being asked. The prime example is a situation that occurred when JT was in the restroom at one of the local restaurants. A man who wasn’t a local patron was in the restroom at the same time, and he unfortunately mistook the fact that JT was looking at him by perceiving that JT was interested in making a sexual advance to him. The man got quite angry at JT and was ready to slug him when one of the regular waiters happened into the restroom and was appalled to see JT in a dangerous situation. He quickly and assertively reprimanded the customer for threatening JT and misinterpreting JT’s behavior and asked him to leave the restaurant immediately. He then comforted JT and reported the incident in detail to JT’s female housemate, who was waiting for JT at the table. That’s the essence of a "Cheers Connection"—when people even go beyond knowing your name to knowing the kind of support you need and providing that support on a moment’s notice.

At another restaurant, the owner trains her new staff by explaining to them that JT, one of their regular customers, will come in weekly and always order the same thing. She cautions them, however, that they should never pre-empt his order by stating for him what they know he will say (because they will hear it so many times) but rather always give him the dignity of placing his own order on his own terms. Similarly, at our church, JT loves to give others a very complicated handshake one that goes through many steps from his hand sliding across someone’s, to snapping his fingers, to doing some back-handed movements. It takes real intelligence to learn this handshake! As part of his "Cheers Connection" at church, everyone, including the sweet old ladies with blue hair, know the handshake and gladly participate in it with JT on Sunday mornings.

We see that JT, his housemates, all of his support people, his sisters, and the two of us have responsibilities in establishing the kind of comfortable, connected, and camaraderie relationships with people throughout all of JT’s favorite places in the community so that he is welcomed, supported, and safe. Remembering always that "what goes around, comes around," we all seek to extend our support to these same individuals so that they will feel supported by us, just as we feel supported by them.

JT has had many natural networks for developing friendships—co-workers, neighbors, members of our church, the regular patrons of all of his "Cheers Connections" and the people who provide support to him. In extending himself to them, we have emphasized that JT should:

• Be an interesting conversation partner by asking his friends questions about things that are important to them such as their children, pets, and hobbies,
• Do kind gestures for others at times of special celebration or special sadness in their lives,
• Give others holiday cards or gifts,
• Host parties and invite people to his home for fun and frivolity,
• Do favors for people and help them, especially in times of need.

Over the years, the individuals that JT has known through Natural Ties have become long-term and valued friends. JT has gone on vacations with them, attended their weddings, enjoyed having them as support people at various times, and generally greatly benefited from their friendship and caring. In addition to JT experiencing friendships with these wonderful students, Rud and I have also greatly valued having our own friendships with them.

Not only was the family listserv a special benefit for "A-Dad", it also was wonderful for JT as well. But how in the world does a person who does not read and does not spell participate in a family listserv where doing email is a requirement? JT has a software program developed by Ablelink in Colorado (www.ablelinktech.com). Using this program, JT dictates his message and his email transfers his voice to the people on the listserv. Thus, we listen to JT’s emails rather than reading them. Then when we reply to JT, the computer reads our message to him. Now, he can be a fully participating member of the family listserv without having the literacy skills that many people perceive to be prerequisites.

A particularly heartwarming aspect of JT’s participation is that he often leads with his strengths, which means that he sings on his messages rather than just relying on words. Two of the favorite emails that come to mind both included songs. One was when A-Dad was very ill and both of us were feeling particularly sad and stressed, JT sent us an email in which he sang the spiritual, "Swing Low, Sweet Chariot." Hearing his voice singing that song with lines such as "If you get to heaven before I do, coming for to carry me home, Tell all my friends I’m a’comin’ too, Comin’ for to carry me home," song comforted us when we needed it most. The other favorite was a day that he was going with his Natural Ties friends to see the Kansas City Royals baseball team play. He was especially excited, and he described what he was going to do and then sang "Take Me Out to the Ball Game." Even though we were hard at work in our offices that day, we felt as if we really did enjoy the all-American experience of going to a baseball game and having a tailgate picnic along with JT and his friends.

In addition to the very important aspect of families staying in touch with each other across the miles, another major family concern that we have alluded to earlier is JT’s long-term support. One of the drawbacks of individualized funding, as contrasted to receiving services totally within an agency, is that we worry that if something happens to us, we wonder who else will provide the kind of oversight and initiative that we provide in making sure that JT’s situation is a good one. Our daughters Amy and Kate love JT very much, but they do not want to (nor should they) redirect their own lives in order to move back to Lawrence to provide support to him when something happens to us and we’re no longer able to do that. That is why the thought that Bryan Riffel would want to make a long-term commitment to JT is truly music to our ears. Although we have fantasized in the past about how wonderful it would be for JT to have long-term support other than what we provide, we really never expected it to "full in our laps." We are most hopeful, and we look forward to nurturing and nourishing the relationship that Bryan has with JT and with us in doing all that we can do to "stack the deck" in favor of this soon-to-be implemented arrangement being a win-win-win-win situation for JT, Bryan, JT’s sisters, and us.

We then asked ourselves what people without disabilities do when they experience intense anxiety and mood swings, and we concluded that we needed to explore the whole area of holistic heath. Over the last several years, JT has found comfort, relief, and anxiety/depression reduction from his weekly experiences with yoga, massage, and regular exercise. He has a private yoga class on a weekly basis from a wonderful teacher who helps him relieve stress through stretching, strengthening, and breathing. He has two massages a week with an emphasis on relaxation and stress relief. His regular exercise enables him to build endurance and experience a sense of being physically fit. We believe that holistic heath is ripe for opportunities for people with autism to move beyond what traditional, psychological, and medical research has offered within a sole Western health paradigm.