Disabled activists demand ‘no forced institutionalization!’

The disability community issued a clarion call to Congress on Jan. 15 to legislate freedom for people with disabilities and seniors.  National ADAPT, a militant disabled activist organization, hosted a celebratory press conference in Washington to announce the introduction of the Disability Integration Act.

Kelly Buckland, executive director of the National Council on Independent Living, said there, “As someone who uses attendant services and has lived in a nursing facility, I can’t begin to express how exciting it is that this is finally going to happen.”

This act would mandate that state entities and private insurers who pay for institutionalizing disabled people and seniors would have to pay for those services at home.  It would end the institutional bias. Individuals could live and eat where they want and go to school and work. It was no accident that the bill was introduced on the Rev. Dr. Martin Luther King Jr.’s birthday.  The act is civil rights legislation in the most fundamental way: It calls for freedom to choose one’s destiny.

The disability community has a long record of working with Dr. King, having marched, rolled, ridden and scooted with him and the Civil Rights Movement.   A banner with Dr. King’s famous quote, “Injustice anywhere is a threat to justice everywhere,” has been carried on many Disability Pride parades. And the disability community has long marked Dr. King’s birthday, Jan. 15, as “Freedom Day.”  Disability activists vow to mark the day that the DIA legislation finally passes as Disability Freedom Day.

This act was originally introduced in 1997 by then Speaker of the House  Newt Gingrich (R-GA) and went nowhere. In the intervening years, activists shifted their priorities to other issues. In 2017, they focused on the Affordable Care Act.  Now, they hope that the new progressive Congress members elected in the midterm elections will back the DIA.

Activists recognize that they have a lot of work to do. They prepared an extensive manual of questions and answers for those meeting with Congress members to educate them. Many current members of Congress were not in the legislative bodies when the Americans with Disabilities Act was passed and are not familiar with the issues.  

ADAPT: ‘Struggle has just begun’

ADAPT says: “Speaker Nancy Pelosi has signaled that the lives and liberty of people with disabilities are not a priority to the House of Representatives.  The start of the 116th Congress has been filled with talk of creative opportunities for progress in every community except the Disability Community, but we refuse to be left behind.” (ADAPT.org/Letter to House of Representatives)  

In her opening speech as Speaker of the House, Pelosi failed to mention the DIA or any plans to oppose the Trump administration’s legislative efforts to dilute the ADA’s benefits with the ADA Education and Reform Act, which passed in the House last year with the help of a dozen Democratic Party votes.

“The struggle has just begun,” commented Anita Cameron, who chaired the press conference and is a national ADAPT organizer. She is also director of minority outreach for Not Dead Yet, a disability rights group that opposes legalization of assisted suicide and euthanasia.  She explained DIA’s importance as civil rights legislation because those institutionalized are disproportionately people of color, particularly Black women.

The act was introduced in three committees.  The Senate referred it to the Senate Health, Education, Labor and Pensions Committee. The House referred it to the Energy and Commerce Committee, which handles Medicaid, and the Judiciary Committee, which handles civil rights. “We have to hold hearings and put it to a vote,” Cameron explained.

Bill S.117/HR.555 has bipartisan support.  It was introduced in the Senate by Minority Leader Charles Schumer, D-N.Y., and into the House by Rep. Jim Sensenbrenner, R-Wis. Sens. Cory Garner, R-Colo., and Elizabeth Warren, D-Mass., endorsed it.  House endorsers are Reps. McMorran Rodgers, R-Wash., and John Lewis, D-Ga. The bill has 144 co-sponsors in the House and 26 in the Senate.

The act is supported by over 100 national disability and senior organizations, including AARP, Brain Injury Association of America, the National Multiple Sclerosis Society, Paralyzed Veterans of America and the National Federation of the Blind. Among the over 600 local and national supporting groups are African-American, Latinx, women’s and LGBTQ organizations. Further, the issue has public support. ADAPT secured a Harris poll in 2010 assessing public support. It showed that 89 percent of  U.S. residents and 94 percent of retirees support the right to live in one’s own home.

Three groups carefully crafted DIA

The bill was meticulously crafted by three organizations:  ADAPT and the National Council on Independent Living with the assistance of the Autistic Self Advocacy Network. It addresses public entities and private insurers that pay for long-term services and supports (LTSS) in institutions to require them to do so in private homes.

The DIA carefully spells out its requirements.  Among other restrictions, these public and private entities cannot limit the availability of providing services because of cost or service caps.  They must maintain a staffing workforce to provide necessary services. They must regularly inform individuals in nursing homes and institutions that they can choose to live at home. To this end, they must develop plans to provide accessible and affordable housing — building it, if necessary.

Now, even people receiving LTSS in their own homes can lead limited lives because services are provided under a medical model that treats them as if they were sick. Policies that restrict individuals to only receive services at home effectively prevent them from going to work or school or traveling, shopping or having intimate relationships. Some policies prevent dependent children from receiving services.  An attendant might cook for an individual who has an LTSS disability, but cannot contractually cook for their dependent children. This denial of services to children can pressure disabled people into giving up their children.

Passage of the DIA would make the ADA a reality for all. Activists are pushing Congress to pass the bill by July 26, the anniversary of the ADA’s signing in 1990.

Nadina La Spina, an ADAPT leader, wheelchair user and filmmaker, spoke at the Jan. 13 New York City Disabled in Action meeting.  La Spina best explains the DIA’s importance on her website: “I don’t remember how many times I’ve been arrested. I lost count years ago. Unfortunately such dramatic actions are necessary to get our struggles to the attention of government, the media, and the general public.

“I wish we could stop fighting,” she continues. “But so many of our people are incarcerated in nursing homes and other institutions, so many are living below the poverty level, so many are being denied basic human rights. The promise of equality of the Americans with Disabilities Act remains unfulfilled. We live in an ‘ableist’ world. We face prejudice and discrimination in every area of our lives on a daily basis. When it seems we’re making progress, we suddenly find ourselves having to fight just to hold on to what we’ve gained.”

La Spina’s 1993 film, “Disability Independence Day March,” can be viewed at tinyurl.com/y85qv2st.