OPEN LETTER – National ADAPT

Open Letter To The Presidential Campaigns

ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom. Formed by a collective of local ADAPT Chapters, National ADAPT has worked for the past 30 years to promote community living for aging and disabled people through reform of the long term service and support system. The undersigned represent the collective that constitutes ADAPT, as distinguished from other smaller, unofficial organizations representing themselves and their smaller, discrete groups and specific interests.

Current systems reinforce a “bias” in long term services and supports; Medicaid automatically pays for institutional placement. States have to build a parallel long term services and supports system to allow people to remain in their own homes and communities. Housing development has not kept pace with the need for accessible, usable units for people with disabilities. Wages and benefits for workers in homes are unequal to those offered to workers in facilities. Equipment as simple as shower benches or as essential as wheelchairs require users to navigate complicated payment and authorization systems.

The situation aging and disabled people have confronted with COVID-19 has exposed how the biases in our current system mean death to us. COVID-19 has pointed to an imperative to shore up existing long term services and support systems and community resources to keep out of and deliver from aging and disabled people from institutional settings. ADAPT activists are looking for Presidential leadership through aggressive and explicit immediate plans to address gaps in the current system for aging and disabled people that result in unnecessary institutionalization and create barriers for returning to the community.

National recovery from the COVID-19 pandemic will offer the opportunity and the imperative to re-build the long term services and supports system. We will have the opportunity to evaluate the gaps in the past system that placed aging and disabled people squarely at the center of the tempest. We will be able to clearly identify how systemic racism has meant that Black, Indigenous and People of Color suffered higher rates of exposure, infection, and death. We will value housing that offers safe harbor and security as we are able to control who comes in and out of our homes. As more people learn the reality of living with disability, we will place more value on physical and programmatic access in all areas of community life.

As we have for the past 30 years, ADAPT looks to the next Presidential Administration to lead the way toward building communities that support and fully include aging and disabled people. ADAPT challenges all systems and policymakers to promote community integration and aggressively dismantle the system of institutional bias that segregates, isolates, and discriminates against people with all types of disabilities, and compounds the discrimination and exclusion of disabled Black, Indigenous and People of Color. We have long embraced the reality that change does not happen in the absence of demand; social and political progress requires relentless advocacy and activism. ADAPT expects public servants and elected officials to share our commitment to the following and we look to the campaigns to provide concrete plans for moving these issues of our rights, our well-being, and our lives forward that include:

Ending the Institutional Bias in health care and long term services and supports

Money Follows the Person as a permanent program

Housing – stabilizing affordability and expanding accessibility for integrated housing

COVID-19 Home and Community Based Services (HCBS) Funding

Direct Support Workforce wages, benefits, recruitment and retention for self-directing aging and disabled people using community-based long term services and supports

Implementation of policies that keep people from going into institutions, rehabilitation facilities, group homes, state hospitals, detention and carceral centers, and any other type of congregate setting.

FREE OUR PEOPLE,

Arizona ADAPT Florida ADAPT
Philadelphia ADAPT South Carolina ADAPT
Kansas ADAPT Southwest Pennsylvania ADAPT
Massachusetts ADAPT ADAPT of Texas
Montana ADAPT Desert ADAPT
ADAPT of Erie, Pennsylvania D.C. Metro ADAPT
North Central Pennsylvania ADAPT Washington ADAPT
Central Pennsylvania ADAPT Wisconsin ADAPT
Capitol Region ADAPT, NY Downstate NY ADAPT
ROC ADAPT, NY

#DisabledNotDisposable #ADAPTandSurvive #LivesWorthyOfLife
NationalADAPT.org @RealNatlADAPT on Twitter & Instagram, ADAPT National on Facebook and TikTok, National ADAPT on YouTube
ADAPTnational@gmail.com

OPEN-LETTER-TO-THE-PRESIDENTIAL-CAMPAIGNS-final Download

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

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

PDF Version

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