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Independent Living News & Policy from the National Council on Independent Living

Letter of Support for Funding for CILs in the Next COVID-19 Package

March 16, 2020

Dear Chairwoman DeLauro, Ranking Member Cole, Chairman Blunt, and Ranking Member Murray,

We write to you on behalf of the National Council on Independent Living (NCIL) and Centers for Independent Living (CILs) across this country. We write to you today with a sense of urgency as COVID-19 spreads across the US, with a request that you invest in the critical work CILs are doing for people with disabilities.

NCIL is the oldest cross-disability, national grassroots organization run by and for people with disabilities. Our membership includes people with disabilities and organizations including Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other disability rights organizations. CILs carry out the Independent Living Program across the US. CILs are non-residential, community-based, non-profit organizations that are designed and operated by individuals with disabilities and all provide a set of core services: advocacy, information and referral, peer support, independent living skills training, and transition and diversion. CILs are unique in that they operate according to a strict philosophy of consumer control, in which people with disabilities directly govern and staff the CIL.

CILs also provide additional services in response to the needs of their communities, and as such they are well-positioned to respond to evolving and escalating needs in times of crisis. As you are aware, people with disabilities and older adults are at disproportionate risk of severe symptoms and complications from COVID-19. There are over 61 million people with disabilities in our country, and the Independent Living Program provides supports and services to people with disabilities in every state, district, and territory in the US.

CILs around the country have been actively involved in responding to the needs of people with disabilities in their communities as a result of the COVID-19 pandemic. Even in this rapidly-shifting environment, CILs are helping people with disabilities by coordinating services, providing information & referrals, helping keep people with disabilities and older adults from involuntary institutionalization during and after disasters, and advocating for the disability community’s specific needs and rights during this crisis.

For example, the Center for Independence in Lakewood, Washington has consistently engaged with Washington State and King County officials to ensure people with disabilities are accounted for in response efforts. They have ensured access to critical information about the pandemic, including ensuring that ASL interpreters are present at all press events. They are working with the Regional FEMA Office to ensure equity for people with disabilities as broad testing plans are pushed out. And, after nursing facilities closed their doors and face-to-face meetings became impossible, they continued to engage with individuals getting ready to transition to the community, requiring nursing facilities to report out on a daily basis.

The Topeka Independent Living Resource Center, Inc. (TILRC) in Topeka, KS has assembled and is distributing supplies and general purpose kits for people who need them. These include general preparation items (hand sanitizer, soap, toilet paper, gloves, cold/flu relief, Ensure, rubbing alcohol, etc.), continence/ostomy care items, diabetic crash items, wound care items, and other items. Other CILs have been working to make sure people with disabilities can cut through unnecessary red tape to access needed medications and medical equipment. They have moved operations online to minimize exposure but maintain continuity of services. They have helped people access accessible transitional housing, quarantine, isolation, and other disaster-related needs while avoiding involuntary institutionalization. They are providing regular safety and health information to consumers about COVID-19. They have helped people identify backup services when first-line services fail or are unavailable, including personal care attendants. In this way and so many others, CILs are working every day – on their own, and with community partners and government – to avoid tragedy as a ripple effect of the interruption or changes to the daily services and supports so many people with disabilities rely on. All around the country, CILs are doing vital work to ensure people with disabilities survive this pandemic.

People with disabilities and older adults are at disproportionate risk during every disaster. CILs have always played a vital role in preparing for and responding to disasters by coordinating with local and state governments, community-based organizations, and other partners to ensure the health and safety of people with disabilities. As the number of disasters in this country reaches unprecedented levels, and as COVID-19 has highlighted just how unprepared we are as a country for meeting the needs of all Americans during nationwide disasters, funding CILs to build capacity in this area is critical.

CILs are capable of meeting the needs of people with disabilities – including filling the enormous gaps left by other service providers – during this pandemic; but because of funding levels, this will be impossible for many of them. CILs are already struggling to meet the demands of their communities, with current funding levels barely sustaining day-to-day operations. The Independent Living Program has been woefully underfunded for decades, and in order to meet the significant and rapidly escalating needs of disabled people around the country as a result of the COVID-19 pandemic, a significant increase is needed. NCIL respectfully requests that you include $100 million for Centers for Independent Living in your next COVID-19 response package.

Thank you for your consideration of our request. We welcome any questions you may have. Please feel free to contact me at kelly@ncil.org or (202) 207-0334 x 1104.

Respectfully,

Kelly Buckland, Executive Director

Sarah Launderville, President

Cliff Perez, Vice President

Todd Holloway, Emergency Preparedness Subcommittee Co-Chair

Ann McDaniel, Rehab Act & IL Funding Subcommittee Co-Chair

Dan Kessler, Rehab Act & IL Funding Subcommittee Co-Chair

cc:

House Committee on Appropriations

Senate Committee on Appropriations