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Independent Living Programs:
Stop the fraud and corruption!

By Jennifer Burnett

The independent living movement holds to the premise that people with disabilities should be in control of their lives, that they can and should impact the systems that affect their lives. Its goal has been to empower people through peer support, information, education, and skills building.

Don't count on the National Council on Independent Living, the national association of CILs, to step up to the plate.

Each state, by law, has a "Statewide Independent Living Council," or SILC, responsible for overseeing development of the "State Plan for Independent Living" -- SPIL -- the plan for how independent living program dollars are allocated in the state, what activities an independent living center should focus on, and more. The Rehabilitation Act of 1992 laid out strict parameters for a SILC, as well as how it should relate to the state agency that gets Rehab Services Administration money.

How all this this plays out in any given state depends on the people involved. In recent months it's become clear that people with disabilities should not assume that their state is doing the right thing with their independent living dollars. It doesn't seem they can count on the feds intervening to force compliance with the law, either.

In the six months since Ragged Edge published "SILC Purses" (Ragged Edge, Year 2002 Issue 4), highlighting the problem with Indiana's SILC, activists report a burgeoning problem nationwide.

Louisiana Gov. Mike Foster decided he didn't like what that state's SILC was doing; he appointed a whole new Council. Pennsylvania's SILC had to file a lawsuit against the state to ensure that the SPIL was adhered to. The SILC won, and is now carrying on the business set out by the Plan, but it wasn't without consequences: the SILC lost its office and half the staff.

Don't assume that your state is in compliance.

The Alliance for Compliance, a group of independent living centers and activists dedicated to enforcing the Rehabilitation Act and other laws affecting people with disabilities, says people need to read and understand the laws and regulations (The www.ilru.org website has a comprehensive library of disabilities rights laws.) By learning the law, we become empowered to have an impact on what our state is doing, they say.

When pressing for change in the system, CILs and indeed the movement may be targeted by their state for reprisals. But without such involvement by activists, a state's independent living movement is doomed. Which is exactly what has been happening in Indiana. Those Indiana centers which promote empowerment and encourage systems change, those that aren't afraid to file a ADA transportation lawsuit, those who are pushing the state to comply with the Supreme Court's Olmstead decision, get punished. The state has quietly moved to silence the voice of the people connected with these systems-change groups, taking its time about awarding contracts them, forcing layoffs. The Indiana CILs that maintain the status quo and don't rock the boat, on the other hand, enjoyed non-interrupted funding.

Indiana state officials, with representatives of the federal Rehab Services Administration present, conducted a three-day audit of Everybody Counts, a CIL with a clear mission of empowering people, to find out how $2,919 in state monies was being spent. RSA found a clean record; still the state issued a report accusing Everybody Counts of bad fiscal management.

SILC problems with their state agencies were a hot topic in January at the SILC Congress. When keynote speaker Troy Justeson, White House Disability liaison, was asked why his office wasn't forcing RSA to "do its job," he said that while his office was aware of what was going on in Indiana and Pennsylvania, it was "going to take a lawsuit" to fix this problem.

Unfortunately, lawyers don't work for free.

Don't count on the National Council on Independent Living, the national association of CILs, to step up to the plate. NCIL has been told by its attorneys that a lawsuit is out of the question. "Because RSA's action or inaction does not affect NCIL directly, NCIL cannot file a suit against RSA," the group's Courtland Townes wrote in a December 2002 memo. "The suit would need to come from an organization or state that is being directly affected."

In what appears to be an effort to help SILCs, NCIL has asked National Council on Disability Chair Lex Frieden to conduct a series of hearings on the problem, and offered to help NCD in the effort.

In this current battle, consumer control, empowerment, and the independent living philosophy are caught in the crosshairs. Unless people act now to make a difference, these words will become nothing more than rhetoric. Join the revolution of empowerment. Know the law.

Jennifer Burnett promotes disability rights in meeting planning, media, and training. A former SILC employee, she is currently Project Director of PA Transition to Home, a nursing home transition project.

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