Category: 2020
National ADAPT Statement on Covid-19 Deaths in Segregated Congregate Institutions
It is time to recognize the similarities between systemic police violence and systems that imprison people, how race and disability intertwine, and how all congregate institutions including prisons, institutions for people with developmental disabilities, psychiatric institutions, and immigrant detention camps arise from systems designed to oppress those whom society devalues.
Covid-19 has killed over 32,750 disabled people in substandard nursing homes in the United States, with a disparate number of those being people of color, (https://www.nytimes.com/article/coronavirus-nursing-homes-racial-disparity.html). National ADAPT is compelled to speak out against this widespread and horrifying human rights catastrophe.
ADAPT strongly denounces the ongoing human rights violations committed against disabled people in all congregate care settings, and we reject the notion that age and underlying conditions sufficiently explain the outrageously high rate of death in these institutions. The occurrence of neglect, abuse, terror, and despair that disabled people experience daily in these facilities is well documented. Yet we continue to be socially removed from our families, homes, and communities in the name of cost-effectiveness, efficiency, or worse, for the convenience and comfort of non-disabled society, and the profit of health care professionals and shareholders.
No longer will we excuse or abide the socially accepted biases that dehumanize disabled people.
No longer will we accept the tired rationalization of “where else are we going to put them” that has been used to justify sending us to die in dismal human warehouses; nor, when deaths are expedited, that they are a natural outcome of age, chronic illness, and impairment, rather than the neglect and abuse fostered by ableist social structures and attitudes.
National ADAPT and our state chapters will no longer abide callous professionals, ignorant of disability theory and rights, who exploit us for their own personal career advancement, and for the advancement of their professions and agencies. We condemn the nonchalant discussions that we must regularly endure in professional forums—discussions, without us, about what is best for us, and questions about where significantly disabled people should be warehoused without any thought to community integration—and everyday discussion that dismisses or erases the annihilation of tens of thousands of disabled people as merely a “natural process” or even beneficial to society as a whole. We equally condemn the doctors with financial interests in congregate care institutions, who sign orders sending us there, again with no consideration of home and community settings and services.
No longer will we accept the naive and hollow promises of institutional reform, as disabled people have endured neglect and abuse in institutions for over a hundred years without significant change despite countless acts, reviews, legislation, and congressional hearings. The Government Accounting Office (GAO) recently found that 82% of American nursing homes had an infection prevention and control deficiency cited in in one or more years, with about half of these facilities having had persistent problems and having been cited across multiple years. We need more diversion from institutions of all kinds, and more affordable, accessible integrated housing in our communities.
It is time to come to terms with the reality that abuse, neglect, and death are not isolated incidents that can be addressed individually through underfunded Ombudsman programs, insincere band aids of ‘culture change,’ or through impotent state regulatory agencies that remain stuck in antiquated medical model perspectives of disability. Instead, we must admit that dehumanization is the very bedrock of institutional segregation.
There is no excuse for the disregard of our basic humanity, especially 56 years after the passage of the Civil Rights Act, 30 years after the passage of the Americans with Disabilities Act and 21 years after the United States Supreme Court Olmstead decision. Enough is enough!
*This number does not include death tolls from states that have been negligent in reporting infections and deaths in assisted living facilities, state institutions, groups homes, or other congregate ‘care’ settings, or who have reported to CDC, but have chosen not to make their numbers public.
National ADAPT’s Response to Vice President Biden’s Plan
Dear Vice President Biden,
National ADAPT commends you for your newly released Plan to Help Americans with Disabilities. Your plan demonstrates an understanding of the discrimination that people with disabilities face and a commitment to our rights. However, there is still work to be done.
In order to truly mobilize the disability vote and demonstrate your respect and commitment to the Disability Community, you must hire a Senior Advisor on Disability Issues for your campaign, to help you engage respectfully with the Disability Community, to be a liaison to the Disability Community, and to assure true accessibility at all of your campaign events.
The language you use about disability in your written disability plan is far more respectful than the words you use when referencing the Disability Community in your speeches. In your speeches you have claimed that “everyone” has a disability, that disabilities should be “overcome,” and that disabled people are “not defined” by our disabilities. These statements are harmful. It is not only inaccurate to say that “everyone” has a disability, but it undermines every person with a disability, and makes light of our disability identities. Suggesting that disabilities are negative attributes to overcome is ableist, when in fact what we must overcome are the barriers of stigma, discrimination, and inequitable systems. Declaring that we are “not defined” by our disabilities ignores the great many people who are disabled and proud, who want to be seen and respected as disabled people. A Senior Advisor on Disability Issues would help you choose respectful language as you prepare your speeches.
While your disability plan is comprehensive, it is not complete.
ADAPT demands:
1. Housing; While the plan refers to affordable, accessible, integrated housing, it offers no specific plan to bring housing stock into line with the number of accessible units needed. The plan proposes to further invest in “supportive housing” which obligates tenants to use services or risk losing housing, conditions long opposed by disability advocates.There must be an increased number of affordable accessible integrated housing units independent of service delivery.
2. Ending the Institutional Bias; The institutional bias exists across all payment and policy systems. Institutional entitlements and preferences embedded in federal law and regulations must end. Aggressive investment in community infrastructure must be concrete, specific and responsive to the needs of individual communities and the people who live there.
3. Workforce Development; Increased wages are a start in addressing the personal care workforce shortage in the community, but the recruitment and retention of personal care workers only begins with dollars and cents. A comprehensive approach to the infrastructure that will develop a quality workforce as demands increase is needed.
4. Covid-19; The section of your Covid Plan referencing people with disabilities and their care takers in the community must include the provision of sufficient personal protective equipment for both of these parties.
Thank you again, for finally releasing a disability plan. We look forward to working with a Biden Administration, and your Director of Disability Policy to assure that your campaign commitments become our reality.
Sincerely,
National ADAPT
National ADAPT Condemns Police Brutality and Calls for Racial Justice
In the middle of a pandemic, Black, Indigenous, and people of color (BIPOC) are not just being killed at alarming rates by COVID19, but are yet again being senselessly targeted by police, and some have been murdered.
For years, on the first day of each National ADAPT Action we hold legal and new members’ meetings. These meetings always include a reminder of police brutality toward Black, brown and indigenous people, and people from other oppressed communities.
National ADAPT condemns the recent murders of:
Ahmaud Arbery, a 25-year-old, unarmed young man who was out jogging, and murdered by the McMichaels, who were tipped off by an off-duty police officer;
Nicolas Chavez, a 27-year-old father of 3 young children, was fatally shot after Chavez was on his knees reeling from being shot not only by sandbags but also a taser;
Breonna Taylor was a 26-year-old certified EMT and first responder during the pandemic. On May 13 police forcibly entered her apartment and shot her 8 times as she slept.
Malik Williams The Police Department in Federal Way, Washington executed this man while he sat in his car. Not being able to move he was shot 86 times.
Jeremy McDole 28, parapalegic killed by Wilmington, DE police.
Saheed Vassell shot 19 times by NYC police Department. The officers jumped out and started firing without warning.He had a psychiatric disability.
Dreasjon “Sean” Reed, a 21-year-old, gunned down by Indianapolis police while he was live streaming a Facebook video; and
On May 26, George Floyd, who was murdered by suffocation while handcuffed and on the ground when a police officer kneeled with all his weight on Floyd’s neck.
We vehemently condemn and must put an end to all murders of BIPOC by police brutality.
Engaging in protest and non-violent civil disobedience is a right National ADAPT has long exercised under the First Amendment of our nation’s Constitution.
However, to protest without fear of violent reprisal, and even death, is a privilege reserved for our white siblings in the disability rights movement. Our disability rights movement owes a great deal to the Black civil rights movement that laid the groundwork for us under the spray of firehoses, the torrent of fists, and too many bullets.
We live today with a system that compounds the social and psychic damage experienced by the ancestors of Black, brown and Indigenous people, bridging the mob lynchings, and smallpox laden blankets of yesteryear into police “lynchings” of today. It is long past time for this to end!
National ADAPT, our local chapters, and our individual advocates and activists commit to the following:
We will call out as racial terrorism the acts of white people when they threaten, harass, and commit acts of violence against Black people and other people of color in public spaces.
We will not re-play, post, or amplify images, videos or depictions of Black people and other people from marginalized groups experiencing violence, because we recognize the trauma experienced by repeated exposure to these images.
We will continue to actively oppose the institutionalization of all people, and the damage done through institutionalization. Our fight includes opposing mass incarceration, the over-criminalization in the legal system, and the racial presumption of guilt that permeate the Black experience in this country and result in disproportionate numbers of BIPOC living in prisons, jails, psychiatric facilities, nursing facilities, and other institutions.
We will continue our anti-racism and equity work to lift up the experiences of multiply marginalized members of our community, to center them, their stories, and their solutions to the systemic racism and ableism we are committed to bringing to an end.
We hold ourselves and our disability rights siblings to the anti-racism work that is intrinsically linked to the fight for disability rights.
As an organization made up of committed social justice warriors, ADAPT cleaves to the teachings of Dr. Martin Luther King, Jr., as one of the leaders of the movement we build upon in our work, “Injustice anywhere is a threat to justice everywhere. We are caught in an inescapable network of mutuality, tied in a single garment of destiny. Whatever affects one directly, affects all indirectly.”
We, the members of National ADAPT, demand the senseless murders end. We can have no justice, no peace, no freedom and no rest until we have justice for our Black and Brown and Indigenous family.
#SayTheirNames
#LivesWorthyOfLife
ADAPT Demands that Congress Support Home and Community Services and Supports, Community Workforce, and Housing
The long existing need for the reform of outdated Medicaid long term care policy has never been more apparent than now, when thousands of disabled people of all ages have been dying in nursing homes and other congregate settings where they have no protection from the highly contagious COVID-19.
National ADAPT demands that Congress:
1. Provide funding in any COVID Stimulus 4.0 package to pay for Home and Community Based Services and Supports (HCBS), and related workforce costs, housing, and transportation needs and support the Coronavirus Relief for Seniors and People with Disabilities Act of 2020 (S. 3544 and H.R. 6305).
2. Make Money Follows the Person permanent in law to ensure people can leave institutions and live in their own homes in the community.
3. Designate the home and community workforce as essential, and ensure adequate Personal Protective Equipment (PPE) is provided for both home and community workers and the people they assist.
4. Provide funding so that the essential community workers are paid a fair and living wage commensurate with the risks they take to provide essential services and supports, including paid leave time in case they fall ill, hazard pay and overtime.
5. Immediately remove the “institutional bias” from Medicaid law and policy.
6. Invest in massive support for development of integrated, affordable, accessible housing in cities, towns and rural areas; infrastructure and rental assistance; and emergency options that address needs caused by the COVID crisis.
Open Letter to Congress from the Real National ADAPT
Dear Congress:
For 30 years ADAPT has challenged the federal government’s preference to fund nursing facilities and other institutions over home and community based services and supports (HCBS) that most older and disabled people say they want. People have had the right to stay in their own homes and live in their own communities with the services and supports they need, instead of being forced into nursing facilities and other institutional/congregate settings since 1990. However, this right has never been realized due to lack of support for home and community services, an extremely under-compensated and undervalued home and community workforce, and due to lack of affordable, accessible, integrated housing. We call this the institutional bias.
This long existing need for the reform of outdated Medicaid long term care policy has never been more apparent than now, when thousands of disabled people of all ages have been dying in nursing homes and other congregate settings where they have no protection from the highly contagious COVID 19, and where staff have not been provided with sufficient personal protective equipment (PPE). Even as major media outlets are reporting on the increasing death tolls of our family members and friends dying alone in nursing facilities across the nation, none of the trillions of dollars in COVID emergency spending that Congress has passed has gone toward the real, long term solution: ending the institutional bias and supporting HCBS, the HCBS workforce, and affordable, accessible, integrated housing.
There is an old adage that the government doesn’t believe in prevention, and so you won’t fund a stop sign until a kid gets killed while crossing an intersection. The time for this stop sign has well passed. The tens of thousands of deaths caused by the Coronavirus could have been greatly reduced if our federal government had acted earlier, and if Congress had listened to National ADAPT for the past 30 years and reduced nursing home and institutional settings with much needed reform in long term care, workforce and housing policies.
So we say to you now, have enough people needlessly died that you will finally listen to National ADAPT and address the institutional bias? Now is the time to sufficiently fund home and community services. Now is the time to fund affordable, accessible, integrated housing. Now is the time to provide liveable wages to the essential workforce of direct support workers that allow us to live in the community.
Now is the time because for 30 years we have told you that we want to live in the community. For 30 years we have told you that institutions are not safe for us. Now it is on the front page of your newspaper. Now it is in your newsfeed and you can not scroll past us anymore. Now thousands have died in nursing facilities and other institutions – our parents, our siblings, our friends. Now is the time for change.
ADAPT is ready to come to the table and work with Congress to end the institutional bias anytime. Right NOW, we demand that funding for HCBS (including Money Follows the Person), community workforce, and housing (including emergency housing) be included in the COVID 4 package.
FREE OUR PEOPLE!
The Real ADAPT Community
ADAPT’s open letter to FEMA administrator Brock Long
Federal Emergency Management Agency
Administrator Brock Long
Dear Administrator Long:
When disaster strikes, people with disabilities are disproportionately affected. It is the stated mission of FEMA “to reduce the loss of life and property and protect our institutions from all hazards by leading and supporting the nation in a comprehensive, risk-based emergency management program of mitigation, preparedness, response, and recovery.” With respect to people with disabilities, FEMA is failing to lead, failing to provide support, and failing to protect lives.
It was gravely disappointing to see FEMA release a strategic plan that does not include preparedness, planning or response elements specifically addressing people with disabilities. The consequences for this lack of planning means that, following disasters, people with disabilities often face choices such as: death or placement in an institution.
FEMA’s strategic plan should include input from, and reflect the experiences of people who have lived through natural disasters, who have perspective on service delivery gaps following disasters, and who have ideas and initiatives for addressing such gaps.
We are demanding that FEMA go back to the drawing board for their strategic plan. Recognize that the current plan’s oversight by not including people with disabilities is not something that can be fixed by holding “after the fact” meetings. Re-start the planning process by including people with disabilities in the formulation of the plan.
We are respectfully requesting the following:
- Cancel the meeting scheduled for November 8, 2018, and notify attending parties of the same.
- Re-convene the strategic planning process, starting with national input/listening sessions, to ensure the experiences and input of people with disabilities who have faced a variety of types of disasters are incorporated into the planning process.
- Include disability advocates, providers, and service and support systems from other areas of the government in the drafting of a strategic plan, to ensure that agencies in other areas of government are not, for example, expediting the needless institutionalization of people with disabilities, rather than coordinating their systems with FEMA efforts and plans.
- Bring in non-governmental partners so they have a clear understanding of the expectations related to their role supporting FEMA’s strategic plan, especially as it relates to people with disabilities.
ADAPT Demands FEMA cancel the Strategic Planning Meeting until after the above demands are met. We Demand REAL disability stakeholder input in the planning, implementation, and execution of services for people with disabilities. We Demand Our seat at the table – Nothing About Us, Without Us!
Confirmation of the meeting cancellation and next steps towards the meaningful inclusion of people with disabilities in their disaster planning and relief can be sent to Philadelphia ADAPT organizer, Germán Parodi at germanparodi@msn.com.
In justice and equality,
Regional ADAPT Organizers
Disability Integration Act reintroduction – Freedom Day 2019
Transcript – Courtesy Jordan Sibayan
Anita Cameron:
Lift every voice and sing.
Till earth and heaven ring
Continue reading
ADAPT Community Olmstead Implementation Plan
The ADAPT Community
OLMSTEAD IMPLEMENTATION
- Involve all groups concerned about developing more community services and avoiding unnecessary institutionalization. (IL, DD, Mental Health, Aging, etc.).
- Get data/information on number of people receiving community services, institutional services and waiting lists for each program. Research all funding (Title XIX Medicaid , Title XX Block grant, Voc Rehab, State etc).
- Nursing Facilities
- ICF-MR’s – large and small – public and private
- State Hospitals
- Waivers – number? How large? Who does it serve?
- Personal Care Option – Who does it serve? Hours per week.
- Home Health
- State funded programs
- Outline of a Comprehensive Effectively Working Plan
- What exists today. Programs, number of people served, waiting lists.
- Development of identification process – using community organizations.
- Development of support services (infrastructure) needed to get/keep people out of nursing facilities, ICF-MR’s and other institutions.
- Intensive Service Coordinator
- Simple Intake System
- Waiver and other program development enhancements
- Number of people per year that will transition out of nursing facilities, ICF-MR’s and other institutions
- Number of people per year that will be diverted from nursing facilities, ICF-MR’s and other institutions
- Identification of and recommendations for the elimination of barriers to community placements
- Regulations (Nurse Practice Acts, licensing, etc.)
- Affordable, accessible, integrated housing
- Transportation
- Quality monitoring system based on consumer satisfaction
- Per year funding for implementation of plan
DIA – Disability Integration Act

What is the Disability Integration Act?
The Disability Integration Act (DIA) is a civil rights, bipartisan and bicameral legislation, introduced by Senators Charles Schumer, Minority Leader (D-NY) and Cory Gardner (R-CO) in the Senate and Representative Jim Sensenbrenner (R-WI) in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S.117, H.R.555) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.
