Self-Determination: Choices For The Disabled

October 29, 2008
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For many years, a clinical setting was the only available way to care for the needs of those with developmental disabilities. Several years ago, the Self-Determination Initiative was formally adopted by the state of Michigan and its use is growing statewide.

“Self-determination is not a service. It is not an entitlement. It is simply a process whereby the person can have greater control over their services than they otherwise might have,” said Mark Keilhorn, director of program development, consultation and contracts for the state of Michigan.

“It’s the difference between a contractor of Network 180 deciding whether these three people will come over and provide you with care throughout the week, or whether you will choose people that you know that you trust.”

None of the state’s $350 million for mental health and substance abuse services are set aside for self-determination, but Keilhorn said that “CMH (Community Mental Health) determines a person is enrolled, meets criteria to be served by the managed-care mental health system. If they are, they determine what the services are that are needed, put a price tag to those, and for persons who wish to go into a self-determination arrangement that CMH agrees with, they essentially make those dollars available for the consumer to direct rather than the CMH.”

It is illegal, however, for a parent or guardian to receive those funds, and the funds must go through a fiscal intermediary, which Kielhorn said is typically an accountant.

Kielhorn said that in some cases self-determination can save the state and consumer money while in other cases it may cost more, but overall the cost is a wash when compared to the clinical setting.

According to Tammy Finn, executive director of The Arc Kent County, a nonprofit organization that provides individuals with developmental disabilities the assistance to advocate for their own concerns, it means using the dollars in a smarter way. Developmental disabilities include mental retardation, autism and cerebral palsy and usually develop before age 22. They include physical and mental impairments that limit activities such as learning or speaking clearly, or physically caring for one’s self.

The Arc Kent County has existed for more than 50 years and is affiliated with The Arc Michigan and The Arc U.S.

“This is just another avenue for families,” said Finn. “It’s a much more individual way of allocating the dollars.”

Persons with disabilities create a list of goals for themselves that are taken into account when funding is decided.

Finn believes that self-determination is appropriate for anyone with disabilities, regardless of severity, and that the key to its success is thorough planning.

“I’ve seen people around the state with significant disabilities who still have opinions and life choices,” she said. “It’s appropriate for anybody. It may take a little more time if someone’s needs are higher, but it can be done. It just takes a lot of planning, a lot of support from families. With doing it this way, there is more responsibility on (the) families.”

Those who decide on self-determination are considered employers who employ care-providers, and it means more paperwork such as employment taxes. Some people find the mix of paperwork and planning overwhelming and chose to stop using self-determination.

“There are certainly some people who decide after a year or two that it’s just too much hassle to be involved at that end, but for the most part, it’s growing statewide,” said Kielhorn.

The principles of self-determination initially were developed nationally in 1993 using a grant from the Robert Wood Johnson Foundation. In 1996, self-determination was implemented in 18 states, including Michigan, in an effort to deal with the rising cost of services for those with developmental disabilities, as well as giving those persons more options in the services they receive.

The Arc Kent County moved to a new location this summer at 629 Michigan Ave. NE, in the stretch of health care concerns sometimes referred to as the “Medical Mile.”

“We’re excited to be here and be a part of this community,” said Finn. “One of the reasons I chose this location is to help folks know that we’re here to help in the community.” HQ

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