Real Story

What matters to J.T. was being physically and behaviorally well, having fun with friends and family, enjoying music, following a routine, and making his own choices. J.T. was lucky: What he valued most in life WAS his life. How many 41-year-olds with so many and such significant disabilities can say the same?

But the success of J.T.’s situation reflected more than sheer luck. J.T. and his reliable allies worked hard to ensure that he lived independently in an environment of his own choosing. (“Reliable allies” is a phrase that better characterizes the people who supported J.T. than the usual “person-centered planning team” or “group action planning team.” It’s better because it described J.T.’s life more in terms of what is typical for people without disabilities and less in terms that are usually used with people with disabilities.) They also made certain that home and work were places where J.T. could thrive. And a large part of the credit went not just to what J.T.’s life was but also how he payed for it. Participant directed funding – sometimes called consumer control of funding or self-determined funding – made it possible for J.T. and his reliable allies to be more creative and proactive, to dream and live big.

To understand how that is so, it’s important to begin by making clear that all funds went directly for his benefit; some could be spent only for specific purposes, but others were not restricted. (For an explanation of traditional approaches versus participant directed funding, which is what J.T. had, see Article: Individual Control of Budgets: Key Components and Research.)

J.T. worked half-time at the Beach Center on Disability where he earned a salary. His use of this money was unrestricted. He also received Social Security for Disabled Individuals (SSDI) because he was a “disabled adult person” who was the child of a person (his father, Rud) who now receives Social Security retirement benefits. Similarly, his use of this money was unrestricted. Further, he benefits from the rental-assistance program (so-called “Section 8”) under the federal housing act. This money was restricted; it was used to help pay his rent. Finally, he benefited from the federal Medicaid home-and-community-based services waiver (HCBS). Likewise, his use of this money was restricted to services that are reimbursable under Kansas’ Medicaid plan.

J.T.’s reliable allies consisted of his parents, a paid housemate, a service coordinator at Cottonwood, Inc., (the local Community Developmental Disabilities Organization or CDDO), a job coach, co-workers, friends, various physicians and other professionals, and a “fiscal intermediary” (a Certified Public Accountant). Based on input from J.T. and his allies, J.T.’s father and legal co-guardian, Rud, and J.T.’s mother, Ann, built a budget to support J.T. according to J.T.’s preferences and needs. Rud then worked with the fiscal intermediary to assure that J.T.’s HCBS residential and day-service providers paid, the taxes on their wages withheld, and J.T.’s tax obligations, as an “employer,” were paid to the federal and state governments. Rud also made sure that J.T. uses his rental-assistance benefit to subsidize his housing and that he expended his wages and SSDI benefits to satisfy his other choices and needs.

Because of the severity of his intellectual disability, J.T. could not count money or follow a budget. His housemate, Tom Riffle, oversaw J.T.’s household budget, always in consultation with J.T. Tom purchases clothing for J.T., and consults with Rud and Ann about hiring assistants and about their rates of pay. Note that Tom, Rud, and Ann determined the rates of pay of the people who support J.T. and are Tom’s assistants. That is important: J.T. could not be “self-determined” unless he could hire the people he wanted to do the work he wanted them to do. And he could not do that unless he could set their rates of pay.

Tom also made sure that J.T. got to and from his work and appointments. J.T. thrived on order and, in fact, actively enforced his schedule by reminding his supporters when it’s time to go somewhere. Tom accommodated J.T.’s wishes, contributing to his feeling that he was the center of his life and that others in his life were taking his needs and preferences into account.

Since Tom handled J.T.’s household account, he could honor J.T.’s tastes and preferences. For example, J.T. loved to have his choice of restaurants for lunch. That kind of a choice might seem insignificant to most people, but it, and comparable ones, were of enormous importance to J.T.

One of J.T.’s responsibilities at work was to sort the mail, with the assistance of a job coach. He also performed other tasks that require him to interact with others. For example, he designed and produced greeting cards on birthdays and major holidays, which he asked each staff member to sign.

J.T.’s vocabulary was limited, partly the result of his difficulty in processing sounds. A music therapist worked with J.T., teaching him to process sounds in ways he enjoyed. Speech therapy also helped J.T. with his articulation and to use an augmented e-mail program produced by Ablelink (www.ablelinktech.com) to communicate with his sisters and friends who were part of his life but lived far away. Ultimately, of course, the therapy enabled him to make known what he wanted and to socialize with others. It advances his self-determination and his integration into his community.

But music therapy was more than “therapy.” It was a major source of J.T.’s “joy quotient” – the time when J.T. sand, played a guitar (rudimentarily, of course), kept rhythm with drums or bongos, found an outlet for his emotions, elevated his spirit and moods, and learned the songs that he invited his friends to sing with him at nearly every social event in his life. Music was a key to J.T.’s soul and to the hearts of those who knew him well and to those who were just entering his life.

His favorite song, “Annie’s Song,” by John Denver, beautifully expresses J.T.’s feelings: “Come, let me love you, let me give my heart to you…come, love me again.” Those words express the reciprocity that existed in J.T.’s life, the interdependency that created “reliable allies” instead of “just” a “person-centered planning team” and the mutuality that acknowledged his positive contributions to others even as they made positive contributions to him.

He closed all of his parties with this song, with his fellow party-goers singing along, often with joyful tears in their eyes. Any service can be therapeutic. The trick was to turn the service into an occasion for joy. J.T. has found the way to do that.

J.T.’s music and speech therapy were paid for out of his HCBS funds. That was because they, like the internal-medicine, psychiatric, dental, and podiatric therapies he received, prevented him from having medical or behavioral conditions or episodes that would impair his health and jeopardize his living in the community (instead of a residential facility). Moreover, these therapies, like the others, didn't simply respond to his needs; they also responded to his preferences.

And that is a major point about participant directed funding: J.T. and his reliable allies could maximize his needs and his preferences by focusing on both, simultaneously, and by constantly keeping J.T. at the center of their concerns.

While participant direction can be empowering, there’s a cost involved for families: time, especially if there is not a service broker available (Link to Research Article). While Rud typically devoted no fewer than 15 hours a month to paperwork, phone calls, crisis control, annual reporting, and other tasks, he maintained it’s well worth the effort. “It allowed us to have absolute responsiveness to J.T.’s needs. We could control funds and use them more flexibly and responsively, putting together a unique package that is best for J.T. Yes, there was an administrative burden on the family, but there was such a benefit for J.T. Money, services, friends, and family: you can’t have quality of life without all these.”

In Kansas as in other states, provider agencies, individuals with disabilities, and their reliable allies are increasingly pursuing participant direction of HCBS funds. That is consistent with some of the principles that govern services to people with developmental disabilities, physical disabilities, and mental-behavioral health disorders: self-determination, community-based services, and support systems that are flexible, respond to needs and preferences, and safeguard a person’s health and presence in the community. (For advice on how to pursue participant direction, see Tip: How do I implement participant direction of funding and supports in my state or area?)

“Putting it all together” summed up J.T.’s life. What’s the “it” in that phrase? “It” included the various sources of money that supported J.T. and  his reliable allies, services that responded to his needs and to his preferences, and policies (self-determination, also known as empowerment, integration, and individualized appropriate services) that enabled J.T. and his allies to aim high and attain the heights they seek. And aiming high and attaining the heights is what anyone wants out of life, most certainly Jay Turnbull.