Tag: PRESS RELEASE

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The long existing need for the reform of outdated Medicaid long term care policy has never been more apparent than now, when thousands of disabled people of all ages have been dying in nursing homes and other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.

PDF Version

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

ADAPT Community Olmstead Implementation Plan

The ADAPT Community
OLMSTEAD IMPLEMENTATION

  1. Involve all groups concerned about developing more community services and avoiding unnecessary institutionalization. (IL, DD, Mental Health, Aging, etc.).
  2. 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
  3. 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.

CALL TO ACTION: Help David get out of this death pit as he desperately wants and needs!!

For Immediate Release


For information contact North Central PA ADAPT:
Shaylin Sluzalis – ssluzalis@gmail.org – (570) 777-0268


CALL TO ACTION: Help David get out of this death pit as he desperately wantsand needs!!


Confiscation of Resident’s Property, Inappropriate Admission to Local
Nursing Facility Are Civil Rights Violations


David, a resident of Embassy of Loyalsock wants out! He also wants his rights restoredand his court appointed guardianship terminated.


During this pandemic, residents like David count for more than 70% of Pennsylvania’s COVID, and 40% of the National Covid deaths. David does not meet eligibility criteria fornursing facility admission, and his current admission therefore violates federal regulations, violates his civil rights, and constitutes a threat to David’s life during this pandemic.


• The court-appointed guardian is violating David’s rights as well as his civil liberties by ignoring his wishes to receive community-based services back in his own home, a much safer environment than any nursing facility.


February 5, 2021, Williamsport, PA


David notified us that Embassy of Loyalsock confiscated the cell phone provided to himby Roads to Freedom, a Center for Independent Living that is federally mandated to provide advocacy, institutional transition services and other disability related services such as Assistive Technology to assure people with disabilities have equal access to information and communication.


David is being forced to share a room, phone and bathroom with three other
people. Stripping him of his personal cell phone is not only a rights violation, it’s inhumane! David does not meet the eligibility criteria for nursing home admission, yet he has been locked in a dangerous, restrictive environment and deprived of the means to communicate with the outside world.


For more information or to contact North Central PA ADAPT:
Shaylin Sluzalis – ssluzalis@gmail.org – (570) 777-0268


David’s right to be treated with dignity and respect is being violated each and
every day.


David has told us, “Every day I wake up in here, I wonder if this is the day I get
COVID and is this the day I will die here.”


The court-appointed guardian has failed to include David in the development
of a plan of supportive services, and in discharge planning as federally mandated.


Duties of any guardian of a person in Pennsylvania include:


(1) assertion of the rights and interests of the incapacitated person;
(2) respect for the wishes and preferences of the incapacitated person to the greatest extent possible;
(3) participation, where appropriate, in the development of a plan of supportive services to meet the person’s needs; and
(4) encouragement of the incapacitated person to participate to the maximum extent of his or her abilities in all decisions that affect him or her, to act on his or her behalf when he or she is able to do so, and to develop or regain his or her capacity to manage his or her personal affairs to the maximum extent feasible.


David has not been afforded these rights.


Disability Rights of PA has written “…the court has the power to place total control of a person’s affairs in the hands of another. This great power creates the opportunity for great abuse.” We see this as what has indeed happened in David’s case, and this abuse/neglect has had a direct impact on David’s mental and social well-being.

Court-appointed Guardian, Mary Beth Swan, Hundington County Area Office of Aging, is guilty of a conflict of interest because she represents both a provider of services that should be meeting David’s needs, and the role of guardian who is bound to assure that David’s needs are being met. Acting as the Financial Manager of his Estate (his home he desperately wants to return to), the Ombudsman, the Adult Protective Service Provider and Guardian are not only grossly conflicting roles, but have given her the power to steal his phone and his life, with no one to represent David’s wishes and interests.

Call Mary Beth Swan,
Protective Service and Care Manager Supervisor
Huntingdon Office on Aging

For more information or to contact North Central PA ADAPT:
Shaylin Sluzalis – ssluzalis@gmail.org – (570) 777-0268
307 10th Street, Huntingdon, PA16652.
(814) 643-5115, (800) 528-9155
Fax No. (814) 643-4249
814-494-2327 Cell
mswan@hbfaaa.org


Tell her ADAPT demands:
• She order the Staff of Embassy of Loyalsock nursing facility to
return David’s phone that is locked in the facility’s safe!
• Notify the Judge of her multiple conflicting roles, and petition
the court for a hearing to restore David’s rights, including an
independent third-party assessment and David’s preferences.
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