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J.T. Turnbull - Putting it All Together for a Life that Belongs to the Person

On paper Jay Turnbull is a 37-year-old man with a severe intellectual disability (mental retardation), autism, a bi-polar disorder, and physical health issues. But to those who know him, “J.T.” (as he likes to be called – naming is part of self-determination) is an active, independent adult who knows what he wants and how to get it …with a little help from his reliableallies.

What matters to J.T. is being physically and behaviorally well, having fun with friends and family, enjoying music, following a routine, and making his own choices. J.T. is lucky: what he values most in life IS his life. How many 37-year-olds with so many and such significant disabilities can say the same?

But the success of J.T.’s situation reflects more than sheer luck. J.T. and his reliable allies have worked hard to ensure that he lives independently in an environment of his own choosing. (“Reliable allies” is a phrase that better characterizes the people who support J.T. than the usual “person-centered planning team” or “group action planning team.” It’s better because it describes 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 make certain that home and work are places where J.T. can thrive. And a large part of the credit goes not just to what J.T.’s life is but also how he pays for it. Individual control of funding – sometimes called consumer control of funding or self-determined funding – has 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 go directly for his benefit; some can be spent only for specific purposes, but others are not restricted. (For an explanation of traditional approaches versus individual control of funding, which is what J.T. has, see Article: Individual Control of Budgets: Key Components and Research.)

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

J.T.’s reliable allies consist 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, build a budget to support J.T. according to J.T.’s preferences and needs. Rud then works with the fiscal intermediary to assure that J.T.’s HCBS residential and day-service providers are paid, the taxes on their wages are withheld, and J.T.’s tax obligations, as an “employer,” are paid to the federal and state governments. Rud also makes sure that J.T. uses his rental-assistance benefit to subsidize his housing and that he expends his wages and SSDI benefits to satisfy his other choices and needs.

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

Bryan also makes sure that J.T. gets to and from his work and appointments. J.T. thrives on order and, in fact, actively enforces his schedule by reminding his supporters when it’s time to go somewhere. Bryan accommodates J.T.’s wishes, contributing to his feeling that he is the center of his life and that others in his life are taking his needs and preferences into account.

Since Bryan handles J.T.’s household account, he can honor J.T.’s tastes and preferences. For example, J.T. loves to have his choice of restaurants for lunch. That kind of a choice might seem insignificant to most people, but it, and comparable ones, are of enormous importance to J.T.

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

J.T.’s vocabulary is limited, partly the result of his difficulty in processing sounds. A music therapist works with J.T., teaching him to process sounds in ways he enjoys. Speech therapy also helps 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 have been part of his life but now live far away. Ultimately, of course, the therapy enables him to make known what he wants and to socialize with others. It advances his self-determination and his integration into his community.

But music therapy is more than “therapy.” It is a major source of J.T.’s “joy quotient” – the time when J.T. sings, plays a guitar (rudimentarily, of course), keeps rhythm with drums or bongos, finds an outlet for his emotions, elevates his spirit and moods, and learns the songs that he invites his friends to sing with him at nearly every social event in his life. Music is a key to J.T.’s soul and to the hearts of those who know him well and to those who are 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 exists in J.T.’s life, the interdependency that creates “reliable allies” instead of “just” a “person-centered planning team,” the mutuality that acknowledges his positive contributions to others even as they make positive contributions to him.

He closes 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 is 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 are paid for out of his HCBS funds. That is because they, like the internal-medicine, psychiatric, dental, and podiatric therapies he receives, prevent him from having medical or behavioral conditions or episodes that will impair his health and jeopardize his living in the community (instead of a residential facility). Moreover, these therapies, like the others, do not simply respond to his needs; they also respond to his preferences.

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

While individual control of funding 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 devotes no fewer than 15 hours a month to paperwork, phone calls, crisis control, annual reporting, and other tasks, he maintains it’s well worth the effort. “It allows us to have absolute responsiveness to J.T.’s needs. We can control funds and use them more flexibly and responsively, putting together a unique package that is best for J.T. Yes, there is an administrative burden on the family, but there is 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 individual control 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 individual control, see Tip: How do I implement individual control of funding and supports in my state or area?)

“Putting it all together” sums up J.T.’s life. What’s the “it” in that phrase? “It” includes the various sources of money that support J.T., his reliable allies, services that respond to his needs and to his preferences, and policies (self-determination, also known as empowerment, integration, and individualized appropriate services) that enable 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.