Loud and Clear: A Special Needs Conversation

Not Accepting “No”: Tips on Advocating Change

By Jim Caffry, Waterbury, Vermont

Government transparency -or the lack of it- is much in the news, and it’s a concept to bear in mind as you advocate on behalf of a loved one with special needs. All of us have been frustrated at one time or another by bureaucracies that don’t offer good reasons for refusing a request. But here’s the thing: since public agencies are funded by taxpayers, they have a legal obligation to explain themselves. In the process, they may provide you with information you can use to forge change.

As an example, the federal Medicaid law and its related regulations allow the states great leeway in designing and implementing the services they choose to deliver with Medicaid funds. In some instances, state policies and practices that shape those services have never been subjected to public review, and you may be in a position to insist that a particular policy be opened to scrutiny. Even if the issue in question has been publicly assessed, you probably have a right to petition for amendment.

There are two laws that can assist you powerfully in this process. Every state has a version of the Freedom of Information Act (FOIA) and the Administrative Procedures Act (APA). APA’s purpose is to involve the public in the rulemaking that determines how our laws are implemented. And the FOIA is a highly effective tool for collecting the information you need in order to do so.

So here’s the drill:

  • Write a “Freedom of Information Act Request” or “public records request” letter to the agency you’ve been negotiating with and ask for documents relating to your issue. There are sample requests on the Internet, but you might, for instance, ask for manuals, studies and communications between staff members. There are usually legally required time limits for them to respond to you.
  • To save time, tell them up front to redact (make illegible) all references to confidential information, such as the names of individuals receiving specific services. In many cases, even if an agency document contains some information that is exempt from public review, the law requires that all of the non-exempt information be released.
  • Once you’ve read their documents, have learned the basis for their position and understand how much it was vetted with the public, check your state APA. You may be entitled to a “notice and comment” process, with a final determination to be made in accordance with the recorded votes of an official body. If the state agency has already gone through such a procedure, you can still petition the agency to adopt, amend or repeal a rule. The APA will outline the steps involved. Look for others in your special needs network to sign your petition, because there is strength in numbers. This may sound like a lot of work–and it is–but social change doesn’t come easy. Given budget sensitivities at all levels of government, it’s likely that public services will be at risk for some time. Use the tools at your disposal to become an effective advocate for government transparency and the flexible and efficient use of public funds to meet the needs of individuals with disabilities and their families.

For more details on this process, click here.

Posted: September 7th, 2013 | No Comments »

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