I worked for a Center for Independent Living for more than 20 years. A Center for Independent Living (CIL) is a non-profit organization that is run by people with disabilities to provide services to people with disabilities. The core services of a CIL are: information and referral, peer support, skills training, transition services (both youth and nursing home), and probably the most important: individual and systems advocacy.
The seed funding for CILs comes from the Rehabilitation Act (1973 as Amended). It was originally theorized that CILs would not need Federal funding forever, because they would gain community support. Fundraising and contracts to support administrative expenses are an uphill climb, because CILs do advocacy, they sometimes bite the hand that feeds. An example is suing your transportation authority for unreliable paratransit services, and still wanting to partner with them for accessibility consulting fee-for-service.
So, financing is hard. It recently came to my attention that two CILs in PA are now closed. It is painful because the work goes on. The disability community has not reached the point that we can stop fighting for our rights. On an individual basis, freedom can be taken away in a blink.
Imagine that you are sick enough that you go to the hospital. With Covid, it is not hard to believe that someone with a life-long physical or intellectual disability would suddenly find themselves on a ventilator. Communication is then difficult. But the ugly truth is that the medical establishment has long viewed independent living for disabled people as a risky proposition (malpractice and duty of care, etc).
The hospital can then step in and take guardianship of a person. I am familiar with one case. A man with an intellectual disability went to the hospital. He had a web of Home and Community-Based Services already supporting him. But what should have been a minor speed bump in his life has become a nightmare. Whether the hospital knew he had services, I don’t know. But the hospital is now barring his supports coordinator from seeing him without permission of the guardian, and they will also not tell the supports coordinator who the appointed guardian is.
There is a lawsuit pending for modifications to the PA guardianship law. This one involves another man being supported by his local CIL. There is a petition on Change.org -https://shoutout.wix.com/so/b7NuBhQrh?languageTag=en#/main
One last thing for readers who may be unfamiliar. Home and Community-based services (HCBS) are a Medicaid funded alternative to using Medicaid dollars to pay for a nursing home bed. Supporting people to live at home is cheaper than living in an institutional environment, and it is more humane. President Biden wants to expand the program.