A New Direction for Independent Living

Looking back 20 years on thoughts about the Independent Living movement. 

Editor’s Note: This is an unpublished and unfinished article from twenty years ago. Tim Wheat had just completed a cross-country bicycle trip visiting Centers for Independent Living and disability rights demonstrations. Tim Wheat has highlighted his current thinking in italics while the original text is not italicized. 

September 23, 2002

September 23, 2022

By Tim Wheat

Twenty years ago I believe I had a lot to say about the direction of Independent Living, but I never finished or explained what I had found on my cross-country visit to other Centers for Independent Living. I re-examine some of my thoughts in the paragraphs below.

The Independent Living (IL) movement does not lack direction because it has been unsuccessful, on the contrary, the IL movement seems to make good sense in a wide variety of disability related areas. It is because of this wide-spread appeal of IL rhetoric that the “direction” of the movement is hard to gauge. 

PHOTO: Tom Kirby at the Roswell Center for Independent Living in New Mexico. One of the Centers I visited on my six month bicycle adventure across the country.

Twenty years ago, I visited several Centers for Independent Living on a special assignment from MCIL’s Executive Director Deborah Cunningham. What I was attempting to point out in this opening paragraph was that I was able to see the Independent Living movement reflected in all parts of the disability community, and not unique to CILs.

Social workers spoke of client choice, person centered planning and independent living. Apartments, especially for older Americans, were adopting the moniker: Independent Living. Larger, older and better funded agencies switched from “case managers,” who may be involved in every aspect of a “case,” to only being the gatekeeper for a particular funding stream or program. 

Twenty years ago I thought I was viewing the great success of the IL movement, but now, twenty years later and more than forty years since the beginning of federally funded CILs, I do not see the same success. In 2002 I saw Centers that were diligently working to include people with disabilities in a variety of ways, but what they did not do was to make themselves the center of Independent Living and faithfully promote and defend the Independent Living movement. 

The historical components of the IL Center have become unnecessary because of the ADA and a change in social attitudes. Many CILs talk about the “four core services,” yet these services no longer are effective at meeting the needs of people with disabilities attempting to live independently. Please examine these core services when Title VII was written as compared to today. 

Twenty years ago there were four core services: Information and referral, Independent Living skills training, peer counseling and advocacy. Now CILs have a fifth core service that can be described as transition. Transition from a nursing home or institution into the community and transition from school-age youth to an independent adulthood. 

If you are not familiar with Independent Living, the idea of core services sounds pretty basic. The movement was progressive at the time and was similar to the Vocational Rehabilitation system that had developed. “Cases” moved, progressed and were tracked in a system that was centered on a file and a counselor, case worker or social worker. 

The federal regulations that make up CILs and the reporting were before the 1990 Americans with Disabilities Act and lacked a lot of clarity. The “services” that IL Centers offer are broadly defined. There are a list of 17 services and yet the four core services are not the backbone of that list. 

One problem with the long list is that it is never clear what a CILs is to do. Everything will fit under advocacy. I cannot see how each thing that we do is either systems advocacy, self advocacy or individual advocacy. The CIL working with people with disabilities to improve the system, build on disability rights and promote community inclusion all are system advocacy. Teaching an individual with a disability to navigate barriers because of their disability is self-advocacy and advocating for someone with a disability issue is individual advocacy. I believe CILs could do their work with advocacy as the only service category. 

Teaching someone to ride the bus can be IL Skills Training, while providing transportation can be a service that directly interferes with a person’s independence. If someone learns to depend on the CIL for transportation, they are less independent. I believe Centers for Independent Living were originally designed to advocate and help sustain reliable accessible transportation for people with disabilities. 

Many CILs got funding to provide transportation and the IL focus of the Centers changed to providers who talked about inclusion, yet profited from a segregated system. 

Thirty-two years ago when the ADA was signed, public transportation was to become accessible and include people with disabilities. Paratransit systems were to provide transportation for people with disabilities who could not access the main-line public transportation system because of their disability. 

The concept was that as fixed-route public transportation became accessible, paratransit would become unnecessary or less necessary. Now in 2022, paratransit in Memphis is as large as it was in 2002. MCIL has not only experienced push-back from local people with disabilities who do not wish to have an integrated public transit system, but we have dual advocacy of supporting accessibility of the fixed-route, while we promote the use of the segregated paratransit system. 

PHOTO: Crossing the Continental Divide on my way to visit two CILs in Utah and the ADAPT National Meeting in Salt Lake City. Notice the ADAPT t-shirt hand painted by Sher Stewart.

The Administration for Community Living News

Department of Homeland Security Finalizes “Public Charge” Immigration Rule

By Alison Barkoff, Acting ACL Administrator and Assistant Secretary for Aging, and Melanie Fontes Rainer, Acting Director of the HHS Office for Civil Rights

 

The Department of Homeland Security (DHS) has finalized a rule defining the criteria it uses when determining whether a person can be denied a visa and/or legal residency because they are likely to become a “public charge.” The final rule comes on the heels of the proposed rule, published February 24, 2022, and is the latest chapter in a long series of regulatory and legal actions surrounding the public charge policy. It includes several provisions that directly affect older immigrants and immigrants with disabilities, their families and caregivers.

For more information and background on the history of the public charge policy, see ACL's March 2022 blog post on the Notice of Proposed Rulemaking and the July 2021 blog post on the history of public charge rulemaking as well as resources from the Department of Homeland Security. 

What’s most important for older immigrants and immigrants with disabilities to know?

Someone may be considered a “public charge” if they are likely to become primarily dependent on the government for subsistence. This is evaluated by looking at prior and current use of certain public benefits as well as other factors such as age, health, and financial resources.

Participation in most public benefits, including ACL’s programs, will notadversely impact a citizenship or residency determination under the new rule. The ONLY public benefits considered in a public charge determination are:

• Long-term institutionalization funded by the government (for example, Medicaid-financed care in a nursing facility). Receiving Medicaid Home and Community-Based Services (HCBS) or other Medicaid health care benefits will not affect a public charge determination.
• Direct cash assistance programs, including Supplemental Security Income (SSI) and Temporary Assistance for Needy Families (TANF).

This is a codification of DHS’ 1999 Field Guidance (the policy that is currently in place). It solidifies DHS’ long-standing position on which public benefits will be considered in a public charge determination and which will not. 

What are the major provisions of the final rule?

DHS received 233 comments on the proposed rule, including many from the aging and disability community. The final rule provides responses to many of those comments, explaining why policy changed or remained the same. The final rule closely mirrors the proposed rule with a few exceptions. The major provisions include:

• Receiving Medicaid Home and Community Based Services (HCBS) will not factor into any public charge determination. Medicaid HCBS, as well as acute care benefits, will not be considered. 
• Long-term institutionalization at government expense will be factored into a public charge determination and while “long-term” is not explicitly defined, the rule includes guardrails. While the rule did not define what constituted “long-term” institutionalization with a hard threshold or day limit, it did specify that short-term residential care for rehabilitation or mental health treatment would not be considered. Long-term institutionalization also does not include imprisonment for conviction of a crime. DHS will collaborate with the Department of Health and Human Services to develop sub-regulatory guidance to help guide DHS agents’ evaluation of past or current institutional stays.
• Evidence may be presented to show unjustified institutionalization in violation of federal law. DHS recognizes that some people are forced to live in institutions due to the unavailability of HCBS and in violation of their rights under the Americans with Disabilities Act and Section 504 of the Rehabilitation Act (as interpreted by the Supreme Court in Olmstead v. L.C.). As a result, an applicant for admission to the United States or an immigration status change may present evidence to show their institutionalization was in violation of federal law, thus mitigating negative weight that may be put on that period of institutionalization during a public charge determination. 
• No single factor alone is determinative of whether someone may be deemed a “public charge.” DHS will perform a “totality of the circumstances test” considering both past and current use of publicly funded institutional care and cash assistance. The test also includes an evaluation of five statutory factors: health, age, family status, assets/resources/financial status, education/skills to determine likelihood of primary dependence on the government for support. No single factor is determinative, however. Thus, past or current institutionalization, receipt of cash benefits, poor health or advanced age alone is not sufficient to render someone a public charge.
• Disability alone is not sufficient for a determination that individual is likely to become a public charge. Disability, as defined in Sec. 504 of the Rehabilitation Act of 1973, cannot be the sole basis for a determination that an that individual is in poor health, is likely to require long-term institutionalization at government expense, or is likely to become a public charge due to any other factor. 
• DHS will consider the medical evaluation performed by a physician when evaluating a non-citizens health: In the proposed rule, DHS did not specify evidence it would consider as a part of the statutory minimum factor evaluation. In the final rule, DHS clarifies it will accept information submitted via forms it is already gathering as a part of the admission, citizenship, or naturalization process. The standard medical report and vaccination record  will be considered as evidence for the health factor. This report captures information on a non-citizens chronic health conditions and/or disabilities and will be used by DHS agents in the “totality of the circumstances” analysis. DHS will work with HHS on guidance to agents to ensure disability competency when evaluating medical conditions or disabilities that appear on the medical report.

What does this mean for immigrant communities moving forward?

Non-citizens should apply for and use the public benefits to which they are entitled, with the understanding that: 

• Long-term institutionalization paid for by Medicaid (or another public source) or cash benefits like SSI or TANF may, but will not necessarily, adversely affect immigration decisions under the public charge rule. 
• Using other services – such as Medicaid HCBS, services provided through ACL’s programs, or the Supplemental Nutrition Assistance Program (SNAP) – will not affect immigration decisions under the public charge rule. 

The final rule will be effective on December 23, 2022, and will be published in the Federal Register on September 9, 2022. 

Read more:

Release from the U.S. Department of Health and Human Services: New Rule Makes Clear that Noncitizens Who Receive Health or Other Benefits to which they are Entitled Will Not Suffer Harmful Immigration 

If you believe that you have been discriminated against because of your race, color, national origin, disability, age, sex, or religion in programs or activities that HHS directly operates or to which HHS provides federal financial assistance, you may file a complaint with HHS at: https://www.hhs.gov/ocr/complaints/index.html.