Little Lobbyists Need Home and Community Based Services Funding in a Covid Relief Package

As families of children with complex medical needs and disabilities, the COVID19 pandemic presents a unique and dangerous threat to our lives. In the best of times, we face additional barriers to health care, education, home and community based services (HCBS), and basic rights.  These barriers are even greater in times of crisis.

Many of our families are experiencing a shortage of home care services during this crisis, including nursing, which is leading to dangerous situations for our children. Therefore, we cannot support any bill that does not include generous funding for HCBS.

Specifically in a covid relief package we need to see

  • Increased HCBS funding so disabled people can remain independent and safe

  • Increased funding for direct support professionals

  • Protections for Medicaid including an increase in FMAP for both Medicaid and CHIP

  • Safeguards against weakening of disability rights protections 

  • Access to medication and supplies refills for 90 days

  • Equal access to recovery rebates since many people with disabilities have extra costs in crises

  • Increased funding for special education supports

Additionally, we strongly oppose any liability shields for corporations, as this would only serve to increase the risk to people with disabilities, especially those living in congregate care. Liability shields would do direct harm to our community, and it is critical that these not be allowed during this crisis. 

The COVID-19 pandemic is affecting all of our lives in some way, especially people with disabilities who face additional barriers to health care, education, home and community based services, and basic rights.  For many in our community, the services necessary to remain independent and safe are being discontinued or interrupted, including Direct Support Professionals, home nursing care, and the delivery of life-saving prescriptions and medical supplies. 

As Congress moves to pass legislation to ease the strain on families across the country, it is critical that they also move to protect and support the rights and safety of people with disabilities, including children with complex medical needs and disabilities.  We are working with allies to ensure that we center the disability community in COVID-19 responses.  We ask members of Congress to pass a new bill to address the ongoing needs of people with disabilities during this crisis, including these priorities:  

Economic Stimulus and Asset Limits for Social Security and Medicaid

Pass economic stimulus for low income individuals, but eliminate or raise asset limits for people with disabilities and older adults in Supplemental Security Income, Medicaid, SNAP, and other means tested programs. This will also address the inverse issue of people with disabilities being unable to purchase usual supplies and services and being at risk of exceeding the asset limits because of the economic slowdown. 

Home and Community-Based Serviced (HCBS) in Medicaid 

  • Increase FMAP match beyond the 6.2 bump to ensure that Medicaid and state governments have the resources they need to ensure care for people with disabilities. 

  • Pass the Corona Virus Relief for Seniors and People with Disabilities, including its HCBS grants to support Direct Support Professional (DSP) and Home Health Workforce and to support aging adults and people with disabilities in their homes and communities. 

  • Pass the Ensuring Direct Access to Direct Support Professionals Act (S. 3220/H.R. 5443).

  • Make the Money Follows the Person (MFP) program permanent.

Housing

  • Immediately provide an increase in McKinney-Vento Emergency Solutions Grants.  

  • Pass legislation to stop evictions to prevent homelessness during the pandemic, including the Eviction Crisis Act.

  • Increase funding for the National Housing Trust Fund, the Section 8 Housing Choice Voucher program, the Section 811 Supportive Housing for Persons with Disabilities program, the HOME Investment Partnerships program, and the Community Development Block Grant program and increase funding for Department of Agriculture housing programs.

Medication/Treatment

  • Ensure that all testing and treatment for COVID-19 are provided at no cost for all individuals whether insured or not.  The Families First Coronavirus Response Act focuses on testing, not treatment.

  • Ensure that individuals can access medication and supplies refills for 90 days, including allowances for partial fills and controlled substances, without cost sharing and with financial assistance to allow for self-isolation for at-risk people with disabilities.

  • Ensure that service providers have access to the necessary training, equipment and medical supplies.

Paid Leave/Sick 

Ensure paid sick days and paid leave provisions include caregivers who can’t work because they are caring for an adult child with a disability or aging family member whose program has closed or care worker is sick. This was not included in the Families First Coronavirus Response Act.

School/Education

Ensure that any legislation to support access to virtual education and other supports are inclusive of the unique needs of people with disabilities, including requirements under the Individuals with Disabilities Education Act. 

Rights

  • Provide states with resources they need to ensure that even during this crisis, people with disabilities have the supports they need to remain in the community and are not forced into institutional or other congregate settings in violation of their civil rights under the Americans with Disabilities Act (ADA) and the Supreme Court’s decision in Olmstead v. L.C., and at increased risk to their health.

  • Ensure the rights of individuals with disabilities and older adults, to be free from discrimination on the basis of disability or age in programs and activities, are protected during all phases of disaster preparation, response, recovery, and mitigation.

  • Statement from Congress re: rationing of care to ensure that when rationing treatment begins, decisions about how medical treatment should be allocated are made without discriminating based on disability.  The National Council on Disability has already raised concerns about this issue in a letter to HHS’ Office of Civil Rights.  

  • Do not allow any weakening of the protections of the ADA for businesses or in the building of new facilities if necessary. 

  • Provide additional funding to states to ensure accessible voting as states are moving to absentee and mail-in voting. 

Developed by: Alison Barkoff, Center for Public Representation; Julia Bascom, Autistic Self Advocacy Network; Rebecca Cokley and Valerie Novack, Center for American Progress; Matthew Cortland; Elena Hung, Little Lobbyists; Nicole Jorwic and Bethany Lilly, The Arc of the United States; Rachel Patterson, Epilepsy Foundation; and Winn Periyasamy

**Please note this is a non-exhaustive list, but meant to raise up priority issues for the disability community.


Image is a photograph of a podium with Little Lobbyists logo in front of the Capitol Building on a sunny day in Washington D.C.

Image is a photograph of a podium with Little Lobbyists logo in front of the Capitol Building on a sunny day in Washington D.C.

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