![A clipping from the Chicago Sun Times on Wednesday, September 17, 2003
Featured Letter:
[image caption] Participants in the "Free Our People March" travel last week along Route 40 in Maryland, about the halfway point between the start in Philadelphia and its destination in Washington. Photo courtesy of Tom Olin
[Headline] Disabled get on the move for freedom
We just celebrated the 40th anniversary of Dr. Martin Luther King's "I have a dream" speech. Forty years later, people with disabilities still have a dream of escaping nursing homes institutions and going back to the community.
About 150 disabled activists-- many in wheelchairs--convened at 4 to begin a 150 mile march on Philadelphia to Washington. [s] two-week "Free Our People March" will end at Washington [k] in our nation's capital today to [m] the need for more home- and community-based attendant services, and to call attention to the institutional bias that lingers in this country. More than 80 percent of Medicaid long-term care dollars are spent keeping people institutionalized, while less than 20 percent as- people who want to live in their homes and apartments, where they are much happier.
[pulled quote] We have a dream to live independently
[text resumes] There's federal legislation that would address this issue: the Medicaid Community Attendants Service and Supports Act. Introduced by Rep. Danny Davis (D-Ill.), H.R. 2032 would assist people with disabilities--regardless of age--in nursing homes back into the community, using the same Medicaid funding that's used to keep them institutionalized. Statistics show that people are much happier and productive living in their own homes instead of languishing in nursing homes.
The major obstacles of MiCASS's passage in Congress are the nursing home lobbyists in Illinois and around the country. Profit is their bottom line, and they have deep pockets to buy off legislators. They continue to be a threat to the civil rights of people with disabilities. They disregard the quality of life for people stuck in their institutions; they see the almighty dollar sign and don't hear the cries of the people who want out.
About 5,000 people with disablities will descend on Washington Park to rally for justice and the right to live in the mainstream community. We have a dream to live independently, free from segregation, as Dr. King could have related to. It's time to have our dream realized.
Larry Biondi,
independant living advocate,
Progress Center for Independent Living, Forest Park](https://npr.brightspotcdn.com/dims4/default/ac5ea19/2147483647/strip/true/crop/786x1242+0+0/resize/840x1328!/format/webp/quality/90/?url=http%3A%2F%2Fnpr-brightspot.s3.amazonaws.com%2F79%2F9e%2Fe3cbdf7e4734ba49acbb4c469809%2F20201127153858-818e5d9a-xx.jpg)
Last week, an attempted federal funding pause caused panic and confusion for people with disabilities and the services that support them. While the memo issuing the pause has been rescinded, the White House has expressed intentions to still proceed with some of their plans.
This week on the Disabilities Beat, WBFO’s Emyle Watkins speaks with Stephanie Orlando, from Western New York Independent Living, about what is at stake for disability programs if funding is paused — or ends.
PLAIN LANGUAGE DESCRIPTION: Emyle Watkins shares the historical context of the independent living movement, led by Ed Roberts, and the establishment of ILCs through amendments to the Rehabilitation Act. Stephanie Orlando, the chief operations officer for Western New York Independent Living, explains funding sources for ILCs, including federal and state funds, and emphasizes the efficiency and cost-effectiveness of the programs they offer. Orlando expresses concern about what would happen long-term with a funding pause. She urges the disability community to stay informed and not live in fear.
TRANSCRIPT
This is a rush transcript provided by a contractor and may be updated over time to be more accurate.
Emyle Watkins: Hi, I am Emyle Watkins, and this is the WBFO Disabilities Beat.
Ed Roberts: There are very few people, even with the most severe disabilities, who can't take control of their own life. The problem is that people around us don't expect us to.
Emyle Watkins: Ed Roberts, who would later be known as the "father of independent living" on 60 Minutes in 1989. Last week, an attempted federal funding freeze threw the disability community into a panic. But to understand why, we need to go back in time a bit to the 1970s and 80s.
Ed Roberts: We built a system, a political system, a system of public policy based on old attitudes that actually allow us off the hook and that have no expectations. They believe that we will not work or participate in our communities, but in fact, we've discovered that the reality is just the opposite.
Emyle Watkins: Roberts, who was paralyzed by polio as a child, spent his life fighting for people with disabilities like him to attend school, work jobs, live independently, and support each other. He founded the first Independent Living Center in the early 70s, to change a system that didn't expect disabled people to contribute fully in society.
Stephanie Orlando: We don't do everything for people with disabilities. We make sure people can navigate to those supports and services that are out there and get them connected and linked.
Emyle Watkins: Stephanie Orlando is the Chief Operations Officer of Western New York Independent Living (WNYIL). Today, ILCs exist across the United States and in other countries. When the Rehabilitation Act was amended in 1978, federal funding was added to create and support ILCs across the country. They now provide a wide array of services, including peer support, education on independent living, connection to supportive services for work, school, and healthcare, advocacy, and help with transitioning out of institutions like nursing homes and hospitals.
Stephanie Orlando: I think it's important to recognize that we've always had long standing support from Republicans in terms of that government should not control our lives, and I think when you look at what independent living really is about, it's about people living their lives according to how they want to and getting the supports to live in the community and not have to cost as much on the government.
Emyle Watkins: ILCs are a conduit for people with disabilities to access what they need to live and contribute in our communities. While some of their funding today comes from donations and state budgets, a significant portion is still enshrined in federal funding because of the Rehab Act. ILCs also get money through Medicaid-funded programs they provide.
Stephanie Orlando: So if you're talking about government efficiency and how funds are being used, this is the most efficient way to help people with disabilities live a full meaningful life, work and be taxpayers and be able to get out there and contribute to our community and our society. That's what independent living is about.
Emyle Watkins: In 2022, WNYIL reported that since 2008, their programs have saved the government over $800 million by keeping Western New Yorkers out of costly institutions like nursing homes and in the community. When the pause was announced, the disability community was looking at an immediate concern. Would a temporary loss of service regress people? Would staff leave for other fields?
Stephanie Orlando: Our funding is diverse, so a pause we can shift through, but if we don't have a workforce, if we don't have people that feel like this is a job that will be there in the future, then we're in serious trouble.
Emyle Watkins: However, what Orlando worries about the most isn't what would happen in the short term. It's what a pause could mean in the long term since their programs are enshrined in law.
Stephanie Orlando: I think it would be difficult to know if it's a pause or ending. To me, it's really get to the point where we pause funds then we have laws that are not being funded. So you have unfunded mandates in the federal government. So does that mean that there will be an act of Congress to repeal laws? That's where my mind honestly goes.
Emyle Watkins: Orlando says she finds the questions the new administration is asking if federally funded programs, confusing. She asks, "What is woke about access?"
Stephanie Orlando: One of the questions is: "does the program provide funding that is implicated by the directive to end discriminatory programs, including illegal DEI, diversity, equity, inclusion, and accessibility mandates?" So accessibility... illegal DEI?So access is a civil right. It's not illegal. It's actually the law. So that's very confusing.
Emyle Watkins: As of right now, despite the funding memo being rescinded, the judge in a case levied by 22 states, including New York, has issued a temporary restraining order and will continue the case. The judge said the order was rescinded "in name only." And that a tweet from the White House Press Secretary shows the Trump administration is attempting to proceed with their review. The restraining order prevents the federal funding freeze in those 22 states. This case and others will determine the future of this situation. However, Orlando urges the disability community to not let fear or confusion set in as a lot is still not known, but she does feel that the community may need to prepare for a fight like Roberts and other disability activists fought.
Stephanie Orlando: I think that that may be our future, again, to fight very hard for our civil rights, and I think we need to save up our energy and focus on what's real, so stay connected to each other and supporting each other and do not promote fear. Promote real information and decide what our tactics will be to move forward and make sure it's clear what independent living is and what it isn't, and what disability rights are and what they're not.
Emyle Watkins: You can listen to the Disabilities Beat segment on demand, view a transcript in plain language description for every episode on our website at wbfo.org. I'm Emyle Watkins. Thanks for listening.
