Organizational Sign-on Letter to ACL to End Institutional Bias due to Guardianship Placements in Long-Term Care Facilities

Request: The undersigned Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), Protection & Advocacy (P&A) systems and other disability-focused organizations, hereby request the Administration for Community Living (ACL), its Administration on Aging (AOA) and Office of Independent Living Programs (OILPs) to discontinue funding and support of aging programs that are using guardianships to unnecessarily place people with disabilities in segregated long-term care facilities or other institutional settings against their will.
 
Background: Independent living programs are mandated by ACL under the Rehabilitation Act of 1973 and its OILPs to advance community integration for people with disabilities as a civil right under the Americans with Disabilities Act and the SCOTUS’ landmark Olmstead decision. ACL’s mission is to “Maximize the independence, well-being, and health of older adults, people with disabilities across the lifespan, and their families and caregivers.” However, ACL through its funding of AOA programs and its under-funding of OILPs/CILs, continues to perpetuate the costly and unnecessary isolation, institutionalization and, ultimately, the full disenfranchisement of people with disabilities nationwide who remain trapped in restrictive guardianships against their will.
 
While ACL/AOA funds Area Agencies on Aging (AAAs) to advance independent living for people with disabilities, AAAs have often used federal funding and guardianships to perpetuate the following conditions:
  • Well over 1.3 million adults are placed under guardianship nationwide (Source: National Center  for State Courts (NCSC) (2016)).*
  • Each year over $50 billion in real estate & personal property assets owned by people with disabilities are seized by guardians nationwide (Source: NCSC (2016)).*
  • Systemic negligence by AAAs/Adult Protective Services (APS) have led to wide-ranging schemes that use guardianships as cover for criminal enterprises, as exemplified by the federal criminal convictions in New Mexico of the leaders of the Ayudando and Desert State Guardianship companies, which held the guardianship of over 1,500 at-risk adults.
  • Systemic negligence by AAAs/APS in Pennsylvania alone permitted the criminal activities of professional guardian Gloria Byars, who held captive over 100 individuals and operated with impunity for over a decade.

ACL’s 2021 report on adult protective services sheds a small glimmer of light on the institutional bias that pervades these programs, showing a significant drop in the number of victims residing in community settings at the conclusion of APS investigations.** Clearly, investing in more comprehensive data collection will be essential to ensuring the responsible support and oversight of AAA programs.

We the undersigned oppose the funding and support of AOA programs that use guardianship to undermine the civil and human rights of people with disabilities. Independent Living programs are mandated to provide services and supports in community settings, including transitioning people with disabilities to live independently and freely in the communities of their choice. Nationally, AAAs, often in a conflict of interest, are abusing their guardianship authority to withhold, remove, and otherwise impede access by participants to IL supports and services. Not only is this wrong on social, ethical and policy levels, it is also economically costly, and wastes millions of scarce federal dollars every year. While there are some aging programs and AAAs doing good work with CILs to advance community integration, there are too many working against our and ACL’s mission-driven work. All alternatives to restrictive guardianships, including supported decision making, should always be exhausted before plenary guardianship is considered as the choice of last resort.

Accordingly, we request the Administration for Community Living to:

  1. Immediately audit the use of ACL funds in states to identify financial supports going to guardianship programs that do not adhere to the spirit and letter of the ADA and Olmstead decision.
  2. Cease funding to AAAs that carry conflicting, dual roles as guardians, APS or ombudsmen.
  3. Issue federal guidelines and directives to the AOA and its funded state aging programs and AAAs that clearly affirm the federally mandated role of the OILPs, its CILs, SILCs and P&As to advance the community integration of people with disabilities, including providing for the least restrictive supports and services in the settings of their choice.
  4. Institute strict parameters on ACL funding to states, requiring accountability, reporting and adherence to the Administration’s underlying mission.
  5. Apply penalties to states using ACL funds that are found to violate the civil and human rights to self-determination and due process of people with disabilities through abusive guardianship practices.

*  Uekert et al. “Adult Guardianships: A ‘Best Guess’ National Estimate and the Momentum for Reform.” National Center for State Courts (NCSC), 2016.

** “Adult Maltreatment Report | 2021|,” p. 22. Administration on Community Living (ACL), 2021. https://namrs.acl.gov/Data/Adult-Maltreatment-Reports/2021-Adult-Maltreatment-Report.aspx

For more information, email: info@liberators4justice.org

ACL Petition Form
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ACL Letter Signers

Most recently updated list. Your organization’s name will be added after verification.
OrganizationState
Able South CarolinaSC
ADAPT MontanaMT
ADAPT of TexasTX
Alabama Disabilities Advocacy ProgramAL
Arizona ADAPTAZ
Assist! To IndependenceAZ
Association of Programs for Rural Independent Living (APRIL)AR
Atlantis ADAPTCO
Bucks County Center for Independent LivingPA
Center for Disability RightsPA
Center for Disability Rights – ConnecticutCT
Center for Estate Administration Reform (CEAR)NC
Center for Independent Living of Central PAPA
Center for Independent Living OpportunitiesPA
Community Resources for IndependencePA
Direct Advocacy and Resource CenterAZ
Disabilities Network of Eastern CT, IncCT
Disability Action Center NWID
Disability Empowerment CenterPA
Disability Equality in EducationPA
Disability Network Southwest MichiganMI
Disability Pride PAPA
Disability Resource CenterIL
Disability Rights & ResourcesNC
Disability Rights Education & Defense FundCA
Disability Rights MaineME
Disabled in Action PAPA
Disabled Queers in Action (DQIA)GA
Diverse Ability IncorporatedAZ
Everybody Counts, Inc.IN
Georgia ADAPTGA
Georgia ADAPT NDN ROLL2POLLGA
Gulf Coast ADAPTTX
Illinois Network of Centers for Independent LivingIL
Independence Associates, Inc.MA
Independence Northwest, IncCT
Independent Lifestyles. Inc. a Center for Independent LivingMN
Independent Living Center of the Hudson Valley,Inc.NY
KaleidoscopeIL
Law Project for Psychiatric Rights (PsychRights)AK
Lehigh Valley Center for Independent LivingPA
Liberators for JusticeUS
Liberty Resources, Inc. (Philadelphia Area CIL)PA
Life and Independence for Today (LIFT)PA
MassADAPTMA
MindFreedom InternationalNM
National ADAPTPA
National Council on Independent LivingDC
Native American Disability Law CenterNM
North Carolina east coast ADAPTNC
North Central PA ADAPTPA
Options Interstate Resource Center for Indpendent LivingMN
PA SILCPA
Pennsylvania Council on Independent LivingPA
Personal Attendant Coalition of TexasTX
Philly ADAPTPA
POPFilms LLCIL
Progress Center for Independent LivingIL
Regional Access & Mobilization Project (RAMP) CILIL
Roads to Freedom Center for Independent Living of North Central PA (RTFCIL)PA
Rochester ADAPTNY
SILVER Collaborative (Saving Institutional Lives Via Emergency Relocation)IL
Southeastern MN Center for Independent Living, Inc.MN
Southern Minnesota Independent Living Enterprises & Services (SMILES)MN
SWPA ADAPTPA
The Arc of PennsylvaniaPA
The Partnership for Inclusive Disaster StrategiesPA
The Statewide Independent Living Council of IllinoisIL
Washington ADAPTWA
World Institute on DisabilityCA