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TASH Position Statement with Policy Recommendations on Community Living

Revised September 17, 2021

“TASH is committed to expanding person-centered, long-term supports and individualized choice for community living for people with significant disabilities.”

– TASH National Agenda, Community Living

Statement of Purpose

All people have the right to live and participate in the community with the supports they need to be optimally self-sufficient, independent, and enjoy personal freedom. Individuals with disabilities, including those with the most significant support needs, should have the opportunity to pursue the same range of lifestyles and opportunities as other members of the community. They should be encouraged to develop relationships with neighbors, classmates, co-workers, and community members. Adults, whether married or single, should have the autonomy to make decisions about where and with whom they live. The preferences of each individual should be honored with respect to their decisions on community life and participation.

Children and adults with disabilities have a multitude of gifts that contribute to the diversity and strengthening of communities. This acknowledgment should be at the heart of supporting people with disabilities to reach their highest potential and enjoy full inclusion. Emphasizing each person’s unique contributions, including their diverse ethnic and cultural heritages, increases the potential for the individual to connect with others in the community and reduces the likelihood that people will be perceived as “clients” rather than as friends, classmates, neighbors, co-workers, and valued members of society. All policies and practices should be oriented toward viewing and presenting individual attributes first and disability as secondary, as disability is but one aspect of an individual’s full identity and should not be viewed as a restriction of one’s engagement in typical communities.

TASH condemns the segregation and institutionalization of individuals with disabilities, including those with the most significant support needs, as blatant violations of civil rights. TASH opposes the continued reliance on institutions and other segregated settings – including large congregate residential settings that restrict individuals’ choices and independence, as well as segregated day habilitation and work settings – as the primary vehicles for addressing the needs of individuals with disabilities. Rather, TASH is dedicated to advancing investments in and efforts toward ensuring that people with significant disabilities have viable choices and opportunities to live, work, recreate, fully participate, and thrive in typical communities.

We firmly uphold the basic human and civil rights of people with disabilities to full and equal participation in society as called for in the Americans with Disabilities Act, the U.N. Convention on the Rights of Persons with Disabilities, and the Universal Declaration of Human Rights, and believe that public policy should support and advance these rights. Individuals with disabilities, including those with the most significant support needs, and families should be entitled to quality educational supports, accessible and affordable housing, financial security, recreation, and employment.

TASH, an international advocacy association of people with disabilities, their family members, other advocates, and people who work in the disability field, endorses the following principles that we believe should guide the interaction of government and policy-makers responsible for the provision of home and community-based services to support individuals with disabilities, including those with the most significant support needs:

  • Supports should enable children and adults with disabilities to participate in every aspect of socio-cultural life including, but not limited to, home, school, work, cultural and spiritual activities, leisure, travel, and political life. These supports should enable people, without penalty, if they so choose, to establish a personal, family and community life and fulfill all responsibilities associated with those aspects of life.
  • Support should be considered a human and civil right and available to people of all ages and irrespective of disability, personal health, marital and family status, and without discrimination based on race, national origin, cultural background, religion, gender, sexual preference, or geography. Supports should not be made contingent on the behavior of the person with a disability. People should be informed about their rights and options and have legal resources to preserve those rights.
  • Supports should promote the full inclusion of people with disabilities in society rather than supplant or undermine relationships or community connections or the roles of ordinary citizens. We all need to learn from each other, recognize our interdependence, and ensure that formal services do not supplant informal supports. When government becomes involved, it should not disrupt existing relationships and connections; rather it should seek to encourage them.
  • Adults and families of children with disabilities should have maximum control over their personal assistance and other supports, with advocacy and support, independent of service agencies, in making these decisions. All individuals should be supported however they need to be to effectively communicate their personal preferences and choices. Thus, supports must be designed to be individualized and flexible, since people with similar needs may prefer different solutions. When people have difficulty expressing choices, independent facilitation should be available.
  • Adults should be able to self-designate those who will represent them, including a friend or family member, instead of having these individuals chosen for them. Personal and civil rights, such as the need for a representative payee, should not be determined by physicians.
  • Adults or families of children with disabilities must have the right to choose the type of support needed and wanted, and how that support will be provided. The role of the service system is to facilitate a vision of full inclusion in community life for all people, to assist people in having access to needed resources, and to organize support in a way that reflects individual and family preferences. Individuals with disabilities (and families for children) should be free to select and/or hire whomever they choose, including family members.
  • Publicly-funded services are an entitlement for people with disabilities. People with disabilities should not be required to live in agency facilities or to become impoverished to obtain supports.
  • Government funding should not be a disincentive to employment; payments to the person should not be treated as disposable, taxable income, or prevent a person from accessing other publicly-available benefits or services they need to attain optimal self-sufficiency. Funding should be allocated to individuals rather than programs. 
  • Services such as fire, police, 911 and emergency medical care have been deemed essential for the health and safety of people in a free society. It is the obligation of public and private agencies responsible for public safety established and/or empowered to fulfill this need to ensure that the necessary accommodations are provided so that persons with disabilities can also access these essential services when needed.

Rationale

All children, regardless of disability, belong with families and need enduring relationships with adults. The actions of states and agencies involved with children should be guided by the philosophy of preparation towards fully inclusive lives and optimal independence in adulthood, predicated by the value of family stability. This requires the funding of family support services, encouragement of a family’s relationship with their child, family reunification of children placed out of home, and the pursuit of adoption when family reunification or some form of shared care is not possible.

The preferences of each adult with disabilities, including those with the most significant support needs, should guide all aspects of the selection of housing and neighborhood, as well as whether the individual will live alone, with their family, extended family, spouse, partner, or friends. These preferences should be informed by exposure and experiencing various options, with an emphasis on promoting optimal independence and social inclusion. The role of government, agencies, and organizations is to provide requested supports to the individual in meeting their needs and preferences.

Individuals with disabilities and families must be entitled to quality educational supports, decent and affordable housing, competitive integrated employment, financial security, transportation, recreation, and social interaction. To this end, TASH will work toward closing institutions and other segregated settings (including large congregate care and segregated work and other day settings), while concentrating its efforts on ensuring that people have individualized, integrated supports to assure high quality of life outcomes and improved social determinants of health.

TASH seeks government policies and funding for services to support all people with disabilities to pursue goals related to achieving optimal independence, self-sufficiency, personal autonomy, and full community inclusion and participation. These supports must give people control over all aspects of their life, including but not limited to areas such as housing, education, employment, recreation, interpersonal relationships, sexuality, and other elements of participation in the community.

Individuals with disabilities should have opportunities to be involved with ordinary people on a regular basis and to develop natural relationships with neighbors, classmates, co-workers, and community members. Home and Community Based Services (HCBS) to support these relationships may include communications assistance, personal care assistance with Activities of Daily Living (ADLs), homemaking, mobility assistance, social support, medical assistance, transportation, pursuing hobbies and recreational interests, job coaching, parenting and informed and supported decision-making.

While support most often comes from families, friends, neighbors, and social networks, some support is often necessary from public sources. The role of government, agencies, and organizations is to determine how they can help the individual in meeting their needs and preferences. As we move toward an era of greater choice and recognition of self-determination by people with disabilities, it becomes incumbent on government to seek ways to directly involve people with disabilities, not simply their representatives or providers of publicly-funded services, in all processes affecting their lives.

To this end, TASH will work toward developing new ways of providing supports and adapting materials, and making decisions so all individuals, regardless of communication styles and abilities, will be able to fully participate in making decisions and developing their own supports.

Policy Recommendations

A core tenet of the disability rights movement, enshrined in the Americans with Disabilities Act (ADA) and L.C. v. Olmstead, is that people with disabilities of all ages have a right to receive services and supports in the most integrated setting, regardless of the source of payment for services or the intensity of their service needs. Most people prefer to age in their homes, and research has shown that individuals who receive needed services in their communities – including individuals with the most complex intellectual disabilities who require the most substantial supports — experience improved quality of life.

However, more than 31 years after the passage of the ADA, over 800,000 people with disabilities are currently on waiting lists for HCBS. Many others are entering institutions against their wishes because they do not have qualified and trained direct care staff to support them in the home, though that is their preference. Yet others are forced to piece together inadequate networks of unpaid supports. This historic and ongoing underinvestment in HCBS leaves people with disabilities, including people with the most significant disabilities, aging adults, and their families waiting years — even decades — for needed community services.  

TASH calls upon the federal government to address the institutional bias that exists in publicly-funded Long-Term Supports and Services (LTSS) so that millions of people will be able to avoid institutionalization as a condition of accessing long-term care. This is a policy that has plagued the provision of Medicaid- and other publicly-funded Home and Community-Based Services (HCBS) since the program’s inception in 1981.

Support a Mandated HCBS Benefit Focused on Individualized, Integrated Supports.
Require a mandatory HCBS benefit that allows for the maximum level of flexibility and self-direction, as well as focusing predominantly on helping individuals achieve optional socioeconomic advancement and full inclusion and community participation. This would revolutionize American culture regarding the way people with disabilities and older adults are treated, supported, and valued in everyday society. As such, TASH believes that any mandated HCBS benefit should include only eligible services that (a) are not facility-based or large and congregate in structure; (b) limit any group services in the greater community to a maximum of three or fewer people[1]; and (c) are provided on an individualized basis in a person’s own private home or in the greater community.

Restrict Federal Funding for Institutional or Large Congregate Care and Increase Federal Investments in Individualized Integrated HCBS Models.

One of the key reasons that both institutional and large congregate settings have continued to persist is largely due to continued state investment (matched with federal dollars) in such models. We firmly believe these settings do not support people with significant disabilities to achieve optimal independence and full inclusion in the greater community. Further, the COVID-19 pandemic demonstrated the lack of agency that people in facility-based congregate settings have over their own lives, as well as the dangerous risks that congregate living has on their personal health.

Thus, we urge the federal government to offer a permanent increased Federal Medical Assistance Percentage (FMAP) to state Medicaid agencies only for services provided under an individualized, integrated model, to compel and incentivize states to offer the most integrated service options based on evidence-based practices that lead to outcomes articulated in the ADA (i.e. independent living, competitive integrated employment, and full community inclusion). TASH is greatly opposed to any future FMAP increases to expand or support ICF/ID services or large congregate residential or non-residential facilities.  

TASH also recommends that state Medicaid agencies who receive enhanced FMAP payments to strengthen or expand HCBS because of the COVID-19 pandemic be required to dedicate a minimum percentage of the increased funding it receives from the program into TA, training, ongoing support, and increased rates/wages to providers and direct support professionals who have committed to prioritizing the provision of individualized, integrated residential and non-residential supports.  

Permanently Authorize Money Follows the Person (MFP) and Require Future HCBS Innovation Grants to States to Have Similar Criteria as outlined in MFP.

TASH encourages the federal government to expand Money Follows the Person (MFP) to allow states to access enhanced federal funding to transition people with significant disabilities from institutional and large congregate residential or large congregate nonresidential settings, and allow for states to use the additional funds tied to individuals under MFP for the allotted 365 days to also be used to pay for individualized, integrated services that are focused on attaining independent living, competitive integrated employment, and full community inclusion. State Medicaid Agencies that annually transition a certain percentage of HCBS participants from group homes, assisted living, intentional residential settings, prevocational, and/or day habilitation services to individualized, integrated supports should receive enhanced funding for such outcomes.

As part of the release of any HCBS-related innovation grants in the future, TASH recommends allotting a certain portion of these grants toward assisting states in (a) recruiting existing providers of individualized, integrated residential and non-residential services to expand their capacity and services; and (b) helping providers of facility-based congregate residential and non-residential services shift to the provision of individualized, integrated employment services.  Such grants should also be focused on helping providers produce HCBS outcomes for individuals with significant disabilities like what is required under MFP and avoid diluting state requirements. If States are going to receive enhanced federal funding to support a strengthening and expansion of their HCBS programs, then they should have to earn that enhanced match by investing in provider transformation models that lead to independent living and full community inclusion as opposed to congregate, facility-based care.

Strengthen Enforcement of Federal HCBS Regulations and Settings Criteria to Assure Implementation with Integrity.

In 2014, for the first time ever, the Centers for Medicare and Medicaid Services (CMS) published a regulation that established a baseline of key criteria and requirements that all home and community-based settings, providers of HCBS, and the systems managing such services had to comply.[2]  However, since that time, the federal HCBS regulation has not been implemented with fidelity by most states in relation to the provision of HCBS in congregate settings. This includes many group homes of four or more individuals, intentional (campus-like) settings, sheltered workshops, and day habilitation programs. When the rule was published in 2014, CMS confirmed that requirements in the federal HCBS rule for HCBS settings apply to all settings where individuals receive Medicaid-funded HCBS. Unfortunately, the majority of states have determined that large facility-based, congregate residential and non-residential settings meet the requirements of the rule, even though many of these settings are not integrated into the broader community, possess isolating characteristics that impede HCBS participants from accessing or experiencing community to the same degree as individuals without disabilities who are not receiving Medicaid HCBS, and are not structured to foster individualized, integrated supports for HCBS recipients. We implore CMS to strengthen enforcement of the requirements laid out in their own regulation and to collaborate with the Administration for Community Living to significantly increase investments in State and provider-level technical assistance and training on the effective implementation of the federal HCBS rule with integrity.

Support Person-Centered Planning, Self-Direction, and Supported Decision Making

TASH also urges the federal government to provide additional funding, technical assistance, and policy guidance to require access to evidence-based strategies (e.g. person-centered planning, self-direction, and supported decision making) that lead to improved self-determination and better quality-of-life outcomes for individuals with significant disabilities.  However, given the troubling variation in proper implementation of person-centered planning and self-direction principles across state Medicaid and other publicly-funded systems, we believe it is also imperative that there be stronger federal policy guidance regarding the essential components that person-centered planning and self-direction should have. For example, the conflation of a functional assessment process with the person-centered plan dilutes the person-centered decision-making process to a more basic set of questions based on the deficits as opposed to the strengths and preferences of an individual. A high-quality person-centered planning process includes an intentional set of discovery, exposure, and engagement activities with the individual and their chosen support network to assist them in thinking through their goals for various aspects of their life. At a minimum, person-centered planning and practice reflect the following domains and indicators[3]:

  • Focus on the person
    • Choice and self-determination
    • Community participation
    • Availability of services and supports
    • Accessible Information
    • Skills, knowledge, and training
    • Positive expectations

Similarly, TASH believes federal guidance is needed to clarify the principles and parameters around self-direction, assuring ongoing individualization, flexibility, and empowerment in the use of self-direction options. Self-direction (SD) is based on the principle of self-determination; therefore, it allows participants to budget authority. However, we are aware of numerous states that have significantly diluted the intent of self-direction or have created parameters around self-direction that specifically discourages individuals from using this option in receiving Medicaid HCBS. Additionally, we recommend the elimination of unnecessary restrictions that limit choice and control of beneficiaries who opt to use self-direction in the receipt of Medicaid-funded HCBS, in accordance with the federal HCBS regulations. Specifically, we request federal policy that reaffirms that states must fulfill the requirements under the federal HCBS rule to allow for beneficiary choice in the services provided and the individuals providing the services under self-directed options.

Finally, despite the tremendous demand by states regarding clearer policy guidance and technical assistance on the application of Supported Decision Making (SDM) with respect to Medicaid HCBS, the federal government has put few resources into this area. We need to pilot additional models to better understand the best way to embed SDM into the Medicaid HCBS system. There is a structure and a process to SDM, but also a built-in flexibility so that it can be adapted to meet an individual’s situation and needs. Therefore, the key is to ensure that the inclusion of SDM as a key aspect of Medicaid HCBS provision does not become restricted or marginalized because of becoming a part of a bureaucratic system. As such, we respectfully request federal investments in a national demonstration grants initiative of SDM with enough funding to ensure that all interested states receive a baseline of resources to support this work (e.g. the demonstration grants initiative could be included as a part of the existing HCBS Implementation Grants section of the HAA, or as a separate national initiative). We also would like to see the establishment of a federally-funded TA center to support the provision of requested TA and ensure the implementation of SDM with fidelity at the state level.

References

[1] Based on data from the University of Minnesota’s Institute for Community Inclusion, as well as by the Center for Quality Leadership (CQL).

[2] Medicaid Program; State Plan Home and Community-Based Services, 5-Year Period for Waivers, Provider Payment Reassignment, and Home and Community-Based Setting Requirements for Community First Choice and Home and Community-Based Services (HCBS) Waivers. Section 441.710(a) of Title 42, Code of Federal Regulations. https://www.federalregister.gov/documents/2014/01/16/2014-00487/medicaid-program-state-plan-home-and-community-based-services-5-year-period-for-waivers-provider

[3] Person-Centered Thinking, Planning, and Practice: A National Environmental Scan of Indicators prepared by the Human Services Research Institute as part of NCAPPS technical assistance. December 2019. pp. 4-5. https://ncapps.acl.gov/docs/NCAPPS_Indicators%20Scan%20_191202_Accessible.pdf