April 28, 2022
Centers for Independent Living (CILs) provide supports and services to people with all disabilities – including people with physical, cognitive, sensory, mental health, and people with other or multiple disabilities – and people of all ages in every state, district, and territory in this country. CILs are non-residential, community-based, non-profit organizations governed and operated by people with disabilities that all provide a set of core services: information and referral, peer support, independent living skills training, transition from institutions to the community, diversion services to avoid institutional placement, and youth transition services. Every CIL also provides additional services based on the needs of their community and consumers. In FY18, the most recent year we have complete data for, CILs:
- Moved 4,103 people out of congregate settings, saving states and the Federal government hundreds of millions of dollars and improving people’s quality of life;
- Provided other core services, which included: advocacy to 58,926 consumers, information and referral to 610,020 consumers, peer support to 41,353 consumers, independent living skills training to 73,262 consumers, and youth transition to 28,134 consumers; and
- Provided other services to hundreds of thousands of disabled people in their communities, which included: assistance to 50,197 people with disabilities in securing accessible, affordable, and integrated housing, including home modifications; transportation services to 60,855 people with disabilities; personal assistance services to 49,444 people with disabilities; communication services to 17,603 people with disabilities; vocational and employment services to 34,731 people with disabilities; and assistance with assistive technology for 36,241 people with disabilities.
CILs provide a unique set of services that is responsive to the needs of their communities and consumers. But too many CILs are struggling to meet the demands of their communities. The figures above represent the number of people Part C CILs were able to serve with the 2018 funding level (the FY18 funding level was $113,183,000; the current funding level is $118,183,000 for FY22). With additional funding, those numbers could be significantly higher.
According to the 2020 CIL Program Performance Report (PPR) data received from the Administration for Community Living (ACL), and compared to counties listed from the 2020 Census, 588 of all 3,221 (18.3%) counties in the US are not served at all by a Part C CIL. This means there are 588 counties in which disabled people do not have any access to independent living services. (We note that there are significant limitations with this data: a county may not be considered unserved even if people in the county cannot receive the full set – or even any of the core services – of CIL services, or a CIL may list a county in their service area but not have the resources to provide services to anyone in that county. Conversely, it does not include counties served by Part B funded CILs, so some of the counties listed as unserved by Part C CILs may be served by Part B CILs.) Importantly, there is not an equivalent measure to identify underserved counties; based on a cursory examination of State Plans for Independent Living (SPILs), the number is also significant.
Even though CILs have been woefully underfunded for years, the services they provide meet essential needs, and they are extremely cost-effective. In fact, the services CILs provide save taxpayer dollars. Research has consistently found that community-based services are significantly less expensive than institutional placements, saving tens of thousands on average per person annually. When long-term services and supports are delivered in a person’s home rather than in a costly nursing facility or other institution, the result is tremendous cost savings to Medicaid, Medicare, and states – while enabling people with disabilities to become more independent, more financially self-sufficient, and less reliant on long-term government supports.
Although national data on cost savings is limited, the State of New York developed a formula that has been tested and proven reliable for calculating the savings generated by the institutional transition and diversion services CILs provide. CILs in New York have generated hundreds of millions in savings each year, for a total of $2.56 billion in savings from October 2001 through September 2017. Read the report. (Note that the figures used for the calculations date back to 2000 and 2002, so the estimated savings are likely more conservative over time. Updated figures would unquestionably result in higher savings.)
The services that bring about these savings – institutional transition and diversion – are carried out by every single CIL across the country. Since transition and diversion were added as core services in 2014 (with the passage of the Workforce Innovation and Opportunity Act), every CIL has been working to help people with disabilities leave institutional settings and remain in the community. CILs are uniquely qualified to do this work; the Independent Living Program was founded on the principles of community integration and full participation, and CILs have been supporting people with disabilities to return to and remain in the community for decades. While CILs are committed to doing this work – and are federally mandated to do so – CILs have received no additional funding to provide this service since it was added as a core service in 2014. Even so, CILs across the country transitioned 4,103 people out of institutional settings in 2018 and provided services to hundreds of thousands of people to help them remain in their homes and communities. While 2018 is the most recent data we have, CILs have continued doing this work since – including throughout the pandemic while disabled people have been getting infected and dying at disproportionate rates in institutional settings. As the only entity federally mandated to conduct transitions from institutional settings to the community, and as agencies uniquely qualified to carry out transitions, additional funding must be provided to CILs for this service. An investment in Independent Living enables this crucial work to continue while saving taxpayer dollars.
Request
CILs: A 2014 report from the Association of Programs for Rural Independent Living (APRIL) estimated a single CIL needs $570,000 in base funding to be fully operational. While this number has undoubtedly increased over time, it is the most recent and accurate estimate we have identified, and we are therefore using this number for our request. This funding takes into account personnel, employee-related expenses, contract expenses, space expenses, supplies/materials, travel expenses, and other operating expenses, each of which have subset categories. It is, however, important that we note this was developed prior to the addition of institutional transition, diversion, and youth transition as core services, so while this funding level would represent an important and much-needed investment, it would still represent significant underfunding. With 356 Part C CILs and 58 Part B CILs, we are requesting $235,980,000 for CIL funding.
SILCs: It is crucial that the appropriations process also begin providing base funding for Statewide Independent Living Councils (SILCs). SILCs conduct the necessary needs assessment and planning for Independent Living services in each state, territory, and district.
The National Council on Independent Living conducted a survey of SILC operations in 2020, and 34 survey responses were received from SILCs that varied in size, structure, and resources. A majority (53%) of SILCs have under $200,000 as a budget. (SILCs have different sources of funding based on a variety of state factors; the most frequent source of funds is Title VII Part B funding). Twenty-four percent (24%) said they don’t have the staff capacity to fulfill their duties and authorities, and 85% said they lack capacity to engage in some activities and authorities, including resource development (59%), advocacy (44%), accessing training opportunities that involve travel (35%), coordination with other entities (18%), and more. Sixteen percent said they regularly have cash flow issues that impact their operations. As a result, we are requesting a modest base funding level of $250,000. With 56 SILCs, we are requesting $14,000,000 for SILC funding.
In total, we are requesting $249,980,000 in funding for the Independent Living line item, which is an increase of $131,797,000. This amount will allow for CILs to begin reaching people with disabilities in un- and underserved counties. It will allow CILs to more fully and effectively carry out the core services that were added with the passage of WIOA, ensuring that all people with disabilities across the country have the opportunity live in the communities of their choice with the services and supports they need. This funding will also ensure that CILs and SILCs can effectively carry out their basic operations.
Across the country, CILs provide leadership and crucial services in their communities, but their ability to support disabled people in their communities has been undercut by chronic underfunding that barely sustains daily operations. The contributions of the Independent Living Program cannot be overstated. CILs are an excellent service and a bargain for this country.
Thank you for your consideration of our request.
