Self-Determination is a method of delivering services to people with developmental disabilities that allows individuals to have more direct control over the services they receive, over the people who provide the services, and over the expenditure of public funds to pay for the services. The primary tools for implementing Self-Determination are the use of an individual budget agreed upon during the person centered planning process and contractual agreements with service providers that reflect the preferences of the individual. The Guideline states on page four, that “Self-Determination shall be a voluntary option on the part of each person”. This includes people with the most severe disabilities who are unable to make decisions for themselves and therefore have court-appointed guardians who speak on their behalf.
The proposed Guideline describes in detail what is involved in setting up arrangements for Self-Determination. This includes working out agreements for employing service providers and handling public funds responsibly. The process is complicated and would be daunting for most non-professionals, with or without a disability.
The draft Guideline allows people with DD to choose varying levels of involvement in the technicalities of hiring and firing staff and managing budgets. These range from doing everything oneself, to hiring a Fiscal Intermediary or other agent qualified to handle budgeting and taxes or the hiring and firing of service providers, to participating in already established programs and services operated by the local CMH, to handing over the whole process of selecting service providers to CMH or another person (page nine: “A person shall not be required to select and direct needed provider entities or his/her direct support personnel if she or he does not desire to do so”). Beyond that, people who want and need a more traditional program of services may choose not to use Self-Determination. These are reasonable adaptations to a complex arrangement to provide services. In some respects, however, these contradict the notion that the purpose of Self-Determination is to give the individual, with or without a guardian, direct control over the management of services and budgets.
In my view, the claim by people who promote Self-Determination, that it gives people with disabilities more freedom to choose the services they want and more authority over available resources compared to other arrangements through CMH, is exaggerated. All agreements as to how Self-Determination arrangements will be handled, how much money will be available to pay for services, and how the finances will be managed is subject to the guidance, approval, and continual oversight of the CMH agency. This is to be expected with an agency that has the responsibility for overseeing the expenditure of public funds, primarily Medicaid funds.
As in any dealings with CMH, there are a number of ways for an individual or guardian to appeal decisions they disagree with. It is important to keep other options available when Self-Determination is impractical or is not suitable to the needs of the individual. Self-Determination can place extra burdens on disabled individuals and families to administer the provision of services and funds normally handled by CMH, while the public agency still has control and must approve the expenditure of the funds provided. At best, these arrangements can open up new possibilities for providing and paying for desired services that are beneficial to many recipients of CMH services.
For my two adult sons who have severe DD and live in a licensed group home, Self-Determination is an impractical arrangement considering their need for a licensed setting, intensive services, and 24 hour/day care and supervision involving shifts of direct care workers who serve all six of the group home residents. My sons are nevertheless afforded the right to a Person Centered Plan (PCP) and an Individualized Plan of Services (IPOS) that assure services suitable to their needs as required by Michigan law. I know several families, however, with adult family members who have severe DD who have chosen to use Self-Determination arrangements and are satisfied with them.
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