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Stakeholder Dialogues Summary Report


I am pleased to share with you this summary of the issues identified and discussed during four U.S. Department of Health and Human Services (HHS) Stakeholder Dialogues and Listening Sessions on the implementation of the Community Living Initiative, which were held across the nation last year.  The Community Living Initiative is an effort to give people with disabilities and older adults greater opportunities to live in their communities and achieve their goals. Many of the issues and challenges identified during the four listening sessions support the need for continued attention to the priorities we are focused on and will serve to guide HHS in the development and refinement of new strategies to support and promote community living.  We appreciate the thoughtful ideas and dedication of those who shared their experiences, perspectives and recommendations at these sessions.

Henry Claypool
HHS Office on Disability

I.  Introduction

On June 22, 2009, the 10th anniversary of the Supreme Court’s landmark decision in the case of Olmstead v. L.C., President Barack Obama launched “The Year of Community Living.” In response, the U.S. Department of Health and Human Services (HHS) established the Community Living Initiative to identify and promote ways to improve access to housing, community supports, and independent living arrangements for individuals with disabilities and older adults. As an important part of the Community Living Initiative, HHS held Stakeholder Dialogues and Listening Sessions with state and local officials, consumers, service providers, advocates, and other critical stakeholders with diverse opinions on issues related to community living. The goals for these sessions were to: 1) learn about successful partnerships and work to support community living; 2) provide policymakers and program administrators with information about the issues and challenges related to community living for people with disabilities and for seniors; and 3) help federal, state, and local authorities create the relationships and infrastructure needed in order to most effectively serve people with disabilities and seniors in the community. In 2010, four one-day sessions were held in San Diego, California; Raleigh, North Carolina; Fairfax County, Virginia; and Boston, Massachusetts. This report summarizes participant comments and suggestions from these Stakeholder Dialogue/Listening Sessions.

Each session had two components. In the first component, the Stakeholder Dialogue, invited participants worked together in small group roundtable discussions on one of five topics related to community living that had been identified by HHS: affordable and accessible housing; access to support services; coordination of funding; the caregiver workforce; and diversion/transition from institutions to the community.  After discussing their topic for between 45 and 60 minutes, each group reported out to the broader group of attendees. The second component, the Listening Session, was an open forum for people to provide input on any topic related to community living of interest to them. In both sessions, participants identified issues of concern, successful community living strategies with which they were familiar, and suggested ways in which federal, state, and local authorities could support and facilitate community living for people with disabilities and seniors.

The purpose of this report is to summarize the input provided by participants at both the Stakeholder Dialogues and the Listening Sessions.

II. Successful Community Living Strategies

Participants were asked to share examples of successful approaches to providing community living options. Many examples of successful programs and services were provided in these sessions, such as services for nursing home transition/diversion, programs for individuals with mental health or substance abuse challenges, collaborations to increase and improve the availability of affordable and accessible housing, and programs supporting the caregiver workforce. The following are examples of community living supports that participants in Stakeholder Dialogue and/or Listening Sessions suggested are working effectively.

San Diego, California

  • Team San Diego, an award-winning strategy developed by San Diego County’s Long Term Care Integration Project (LTCIP) with input from stakeholders, is a community training program designed to change the culture of how services are delivered to seniors, people with disabilities, and the chronically ill. Team San Diego aims to improve communication between consumers and providers and among multiple health and social service providers, encourage consumer and caregiver participation in health planning and decision-making, and improve care coordination. More information may be found at: and
  • The San Diego County Network of Care (NoC), a web-based resource and information-sharing system was identified by participants as a user-friendly one-stop resource for local health and social service information, as well as a personal, confidential medical record and communication tool for consumers, physicians, providers, and caregivers. The NoC was developed under an Aging and Disability Resource Center (ADRC) Grant from the Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS) that was held in partnership between San Diego's LTCIP, the Del Norte Area Agency on Aging, and the California Department of Aging. More information may be found at:
  • San Diego participants pointed to a successful collaboration between the Department of Housing and Urban Development (HUD) and the Department of Veterans Affairs to prevent homelessness among veterans as a useful model for expanding community living options for seniors and people with disabilities. More information may be found at: In addition, they identified California’s Emergency Housing and Assistance program as a valuable program that helps people through the state with vouchers for emergency housing transition. More information may be found at:
  • Listening Session participants supported continued operation of the residential Lanterman Developmental Center in Pomona, California, as a place that provides high-quality services and supports to people with developmental disabilities residing within the center. The suggestion was made by several individuals that the expert staff at the center could also provide quality services and supports to consumers living in the community. More information may be found at:
  • The Southern Caregiver Resource Center (SCRC) is a successful coordinated effort from a private, non-profit organization that provides all services related to caring for adults with chronic and/or disabling conditions. SCRC is funded by grants from the California State Department of Mental Health, San Diego County’s Aging and Independence Services, and private foundations, and by individual and corporate donations. More information may be found at:
  • California’s Multipurpose Senior Service program (MSSP), a MediCal waiver program, blends the services of a nurse and social worker to provide social services and health care management to prevent or delay institutional placement of frail elderly clients who are certifiable for placement in a nursing facility but who wish to remain in the community. More information may be found at:
  • The Program of All-Inclusive Care for the Elderly (PACE) is a successful program that helps frail seniors continue to live safety and successfully in their own homes. Services include primary medical care, medications, physical and occupational therapy, adult day programs, and home care. More information may be found at:
  • Under an ADRC grant to the State Independent Living Council, the Coleman Care Transitions model is being implemented in San Diego., In the Care Transitions model, a transition coach supports patients over a four-week period in making the transition from hospital or acute care facility to home. More information may be found at:

Raleigh, North Carolina

  • North Carolina’s Community Resource Connections for Aging and Disabilities (CRCs), an ADRC initiative, provides information and assistance on issues affecting older individuals and adults with disabilities and their families. Session participants mentioned in particular the CRC Community Readiness Tool that is designed to facilitate objective discussion with organizations and institutions about delivery of information, referral, and assistance to consumers in the community who need long-term services and support. More information may be found at:
  • The North Carolina Systemic, Therapeutic Assessment, Respite and Treatment Program (NC START) serves adults (age 18 and older) who have a primary diagnosis of Developmental Disability (DD) and challenging behaviors, often with a co-occurring mental illness. The program provides 24/7 crisis response and consultation as well as on-going preventative, cross-system crisis planning for eligible individuals. More information may be found at:
  • In an effort to promote communication and collaboration, the North Carolina Division of State Operated Healthcare Facilities developed a planning document for case managers, service providers, state agencies, state-operated Developmental Centers, and community-based organizations involved in transitioning individuals from the Developmental Centers into the community. This document outlines the collaboration needed among the transitioning individuals, their families and guardians, and staff from the Developmental Center, Local Management Entities (LMEs), case managers, NC START (adult only), and residential and service providers. More information may be found at:
  • The non-profit organization, Bridge II Sports, is a public-private partnership between Parks and Recreation services, Independent Living Centers, rehabilitation centers, the North Carolina Office on Disability & Health (NCODH), and the state school systems. More information may be found at:
  • A 2008 NCODH publication, “Barriers to Health Clubs & Fitness Facilities: A Guide for Accommodating All Members, Including People with Disabilities and Older Adults” was the result of a partnership between NCODH and fitness and recreation professionals, persons with disabilities, disability organizations, and community residents, and was based on a community–centered training model. More information may be found at:
  • The University of North Carolina at Greensboro (UNCG) has a four-year post-secondary education program for adults with intellectual disabilities, “Beyond Academics,” that prepares enrolled students for a self-determined lifestyle after college that emphasizes careers, meaningful avocation, and community living. Students with intellectual disabilities enter a certificate track and attend Beyond Academics classes and other classes that provide fully inclusive education experiences for matriculating students. More information may be found at:
  • The nationwide College of Direct Support (CDS) offers an online training program for direct service providers, with training curricula for people who support individuals with disabilities. Training is delivered in a web-based format for easy accessibility and availability. The executive director of The North Carolina Council on Developmental Disabilities is on its National Advisory Board. Partners with CDS include the American Network of Community Options and Resources (ANCOR), the Developmental Disabilities Nurses Association, and the National Council for Continuing Education and Training. More information may be found at:
  • The North Carolina Division of Services for the Deaf and the Hard of Hearing (DSDHH), the state correctional system, and representatives from education and the judiciary are partners in an effort to address the need for interpreters in the judicial and corrections systems. A related partnership between DSDHH and the court system is a program to educate attorneys about the need of interpreters for clients with hearing loss.
  • The NC Housing Coalition (formerly the NC Low Income Housing Coalition) leads a campaign that empowers working families, people in crisis, seniors, and persons with disabilities to meet their housing needs with dignity and opportunity. The Coalition’s website provides information on, and links to, efforts such as the NC Housing Finance Agency’s guide, “Fair Housing for Tenants with Disabilities” and its locator for accessible, affordable units throughout the state. The Coalition also links to Community Alternatives for Supportive Abodes (CASA), which develops housing and administers rental subsidies for people with disabilities in Wake County; information on Housing and Mortgages for People with Disabilities; and the Alliance for Disability Advocates/Center for Independent Living (ADA/CIL), whose staff members are committed to supporting people with disabilities in finding housing options for community living. More information may be found at:
  • North Carolina’s CareLINK is an information and referral website that is the result of a collaborative effort of the North Carolina Department of Health and Human Services and many other government and non-profit information and referral stakeholders across North Carolina. The website links to services for people with disabilities, including caregiver supports, health services and equipment, home and community living, legal services, transportation, and education. More information may be found at:

Fairfax County, Virginia

  • The Virginia Easy Access website is a public-private partnership with the Commonwealth of Virginia, Northern Virginia Disability Navigator, SeniorNavigator, and 2-1-1 Virginia that provides seniors and adults with disabilities and the providers that support them with a connection to community resources that is secure and confidential. Easy Access is a part of the No Wrong Door initiative to connect service agencies with each other and streamline the process of applying for and qualifying for services across different programs. More information may be found at:
  • The Washington Metropolitan Area Transit Authority (Metro) is partnering with the region’s disability advocacy groups and social service agencies in a regional travel training program for people with significant disabilities. This program resulted from an award to Metro of almost $1 million in federal funds. More information may be found at:
  • The University of Virginia is working with local hospitals to provide telemedicine initiatives to extend the reach of medical care into individuals’ homes, which is of tremendous help to individuals facing transportation barriers.
  • Participants noted a unique collaborative effort between the Commonwealth of Virginia Wounded Warrior veterans program, the Department of Veterans Affairs, the Department of Behavioral Health and Developmental Services, and the Department of Vocational Rehabilitation that showcases effective collaboration across different state agencies in the coordination of services.
  • Participants described Fairfax County as being “good at partnerships and communication among agencies,” for coordinating aging services including the Area Agency on Aging, Adult Protective Services, adult home care, Meals on Wheels, Volunteer Support Service West, 50-plus programs, and long-term care coordinating councils.
  • Northern Virginia Community College has a community of providers offering whole health peer support services for individuals with mental illness that focus on supporting individuals’ efforts at healthy living and on taking a holistic view of health that recognizes that many people who have a serious mental illness also have diabetes, obesity, heart, or other health issues.
  • Participants in Northern Virginia pointed out that much has been learned about peer-based support services from the independent living movement, not only as a way to supplement services provided by caregivers, but also as a support for helping individuals with disabilities successfully self-direct their care.
  • The Jewish Foundation for Group Homes in Virginia has identified and begun to address a gap in education transition services, which typically end as soon as an individual leaves the education system. The organization started a transition program for adults that picks up where the education system leaves off and makes it possible for them to take time to develop the skills that are required to be successful as an adult in the community.

Boston, Massachusetts

  • The Massachusetts Executive Office of Elder Affairs, the Executive Office of Health and Human Services and the Office of Disabilities and Community Services are actively working to implement Community First, an overarching policy of enabling citizens to age with dignity and independence in their communities through access to person-centered integrated systems and supports. One of the mechanisms supporting this effort is the Community First 1115 waiver application, which reflects input provided by participants at several waiver stakeholder meetings. More information may be found at:
  • Latinos in Action is a statewide training initiative for Latinos in Massachusetts. Due to the great need for cultural diversity in mental health services, Latinos in Action has been training people to become peer facilitators and obtain peer specialist certification. Boston participants especially noted the services Latinos in Action provides through the North East Recovery Learning Community, which provides peer support and services to people with psychiatric disabilities throughout the region. More information may be found at:
  • The Massachusetts Families Organizing for Change (MFOFC) is a statewide grassroots coalition of individuals with disabilities and/or chronic illnesses and their families, providing information, leadership training, and other support to families and individuals. Each region of Massachusetts has representation on the statewide Steering Committee.  More information may be found at:
  • The MassHealth Program helps people with long-term disabilities live in the community by providing funds to hire Personal Care Attendant (PCA) services. More information may be found at:
  • Boston participants discussed the value of a peer support program for people with mental illness who are re-entering the community following hospital discharge. They also noted the values of supports such as those listed on the National Alliance on Mental Illness (NAMI) website. More information may be found at:
  • As in San Diego, participants in Boston identified PACE as a successful program that helps frail seniors continue to live safely and successfully in their own homes. More information may be found at: In addition, Massachusetts has a Senior Care Option (SCO) program that blends the funding streams for Medicaid and Medicare, and more information may be found at:
  • Boston participants recognized the efforts of CMS to educate the public about long-term supports, particularly noting a new technical assistance tool for assessing the current state of a state’s long-term care system, including progress toward rebalancing available on the CMS website.
  • Noting the lack of skilled workers to provide care for people with disabilities, Boston participants pointed to the City Year program, in which young people at risk of dropping out of school participate in one year of full-time community service, as a model for ways in which high school students and other potential personal care attendants could get hands-on experience and learn what such services are all about. More information may be found at:

III. Issues of Concern

In both the small group roundtable discussions of the Stakeholder Dialogues and the open forums of the Listening Sessions, participants identified issues and challenges to community living for people with disabilities and seniors. These concerns fell into the following major topic areas 1) coordination and collaboration among agencies; 2) housing; 3) access to services, including services for transition/diversion of people with disabilities from institutional care and for individuals with mental health or substance abuse challenges; and 4) the caregiver workforce. A summary of the participants’ input on these topics follows.

Coordination and Collaboration among Agencies

Participants in the Stakeholder Dialogues and Listening Sessions stressed that having services in the community such as housing, health care, transportation, caregivers, and information and referral are all critical to the support of persons with disabilities and seniors in community living. When just one of these key components is lacking, a person may be forced from their home into an institution. A concern voiced by many session participants was that a lack of community partnerships resulted not only in fragmented services, but also gaps, inefficiencies, and duplication of services. In particular, participants felt that efforts to help individuals transition out of institutions were not being coordinated with efforts to ensure the availability of post-transition housing. Also sufficient, appropriate housing and support services for transitioned individuals were greatly lacking. Although many observed that a number of service providers, government agencies, and advocacy and other organizations are combining their efforts and implementing collaborative programs, a more global effort to develop infrastructure and services in a coordinated fashion is needed to ensure that the different service systems are in sync with each other, and operate as a comprehensive network of supports and services.

Session participants also raised concerns about funding silos and lack of coordination across funding streams and programs. Separate funding and delivery systems for different disability and age groups are associated with inconsistent services for different disability populations. Participants also recognized that, for individuals with disabilities and seniors, navigating the details of community living involves so many different funding sources, eligibility requirements, and provider organizations, that it is often very difficult for consumers to identify and access the supports they need. Many individuals do not know where to go for assistance, or have difficulties finding the specific services they need or want because of barriers such as the varied vocabularies of different agencies or service systems. Also according to session participants, siloed funding typically results in providers being unfamiliar with the types of services available from other providers and/or through other funding streams.


According to participants, a major challenge to meeting the community living needs of people who have a disability and/or are aging is a lack of affordable, accessible, and integrated housing in the community. The lack of such housing is a particularly serious barrier to transitioning people from nursing facilities. Specific issues related to housing raised by participants in the sessions included:

  • There are too few affordable, accessible housing units in public housing developments. Follow-up on builder promises to set aside a percentage of units for accessible and affordable units (in order to receive low-income housing credits) often does not occur.
  • Although information about housing modifications or assistive technology that could assist individuals in living in the community independently is generally available, there are relatively few financial resources available for making these modifications.
  • Housing advertised as being accessible may address only obvious accessibility needs, such as wheelchair access. “Non-obvious” accessibility things such as grab bars, door levers (instead of doorknobs), and fire alert systems for persons who are deaf or hard of hearing are just as important as wheelchair ramps and wide doorways.
  • Many individuals with disabilities have periodic or episodic needs for a higher level of care, and may need to go into a hospital or nursing home temporarily. In doing so, they may risk losing their home, moving to the end of a housing waiting list, or having to re-establish their community living arrangements completely. In the worst case, they may be forced to remain in institutional care long-term.

Access to Services

Particular concern was raised by session participants with regard to how Medicaid waivers, which are frequently the primary payment source for in-home care services, are allocated. One major concern was that many Medicaid waivers for in-home care and community-based services are allocated by diagnostic labels (Developmental Disabilities (DD), HIV/AIDS, Alzheimer’s, MR/ID) or age, rather than by type of need. This not only keeps people from getting the supports they need because they are not in the right group, but also contributes to conflict between different disability groups competing for resources. As one participant put it, “It would be really helpful for people with disabilities if we could have fewer waivers, and provide the same kinds of supports for people whatever their specific disability is.” As one example, people with a brain injury that occurred before age 22 are covered in the DD waiver, but there is no Medicaid coverage for people with adult onset brain injury other than the elderly or disabled waiver, which does not have the cognitive rehabilitation and life skills training services that people with brain injury need.

Participants said that transition from, and prevention of, institutionalization is difficult without adequate support services in the community, and that it may be difficult to implement transition and diversion efforts even in cases where such services are available. One participant noted that program staff trying to reach individuals in nursing homes who may be eligible to participate in a transition program “must convince administrators to let them in, which is not always easy when transition means a loss of funds to the facility.” Another mentioned a hospital discharge study [source unknown] showing that individuals whose post-hospital service needs were evaluated by community providers were typically helped to find the needed services in the community, while individuals evaluated by hospital staff usually ended up in a nursing home or similar institution. The participant believed that a likely reason for this is that some hospitals are part of a corporation that also owns nursing homes, saying, “The incentives [for them] don’t seem to support the goals of community living.”

Many participants noted that in discussions of the service needs of the disability and aging communities, mental health and substance abuse issues are often considered to be relevant to only a small subset of the population. Although individuals with psychiatric disabilities and those struggling with substance abuse issues face some challenges and service needs that are specific to these disabling conditions, mental health issues are a common thread across many populations struggling with community living. Aspects of mental health play a role in community living whether an individual has a serious mental illness or not, including aging in place, coping with a disability, and being an effective self-advocate. Participants noted that individuals with psychiatric disabilities may not be effective self-advocates for wellness and routine health care, so it is important to make sure services are in place to identify and treat diabetes, obesity, heart disease, and other chronic conditions in these individuals. Peer support is very valuable for all populations, and especially beneficial for individuals with psychiatric disabilities who may be less likely to identify their own service needs or seek appropriate help and support.

Other issues of concern that were raised in the sessions with regard to access to services were:

  • Long waiting lists for various service providers prevent many persons with disabilities from receiving services.
  • There is a huge need for quality dental care. People with disabilities are often forced to wait for a dental emergency because preventative dental care is not covered by Medicaid.
  • Insufficient outreach by programs and service providers has often made it difficult for the people with disabilities and seniors in the community to learn about or utilize programs or services. Development of – and funding for – strategies such as “mobile outreach” is particularly important for people with a rare disability, or speakers of a low-prevalence language.
  • Participants at all sessions noted a lack of culturally competent providers in many places, as well as a lack of interpreters for non-English speakers or for the deaf and hard of hearing. In addition, communication access (such as assistive listening devices or captioned telephones) is limited or unavailable on many governmental service and help lines.
  • There are often “humiliating barriers” within the health care system that individuals in the disability community face when simply visiting the doctor for a routine exam. Participants mentioned, for example, that many doctor and dentist offices do not have accessible exam tables, and some individuals with physical disabilities are forced to use cabinets that store linens or other supplies as exam tables.
  • Additional independent living programs, adult foster care programs, and services for young people with disabilities are needed.
  • Complicated websites and search engines can make it difficult to locate potential sources of program funding. Providers often do not know key words to search or where to find funding opportunities.

Caregiver and Direct Support Workforce

Participants in all sessions acknowledged that there are not enough qualified people providing care to people with disabilities in the community. One major problem is that, in many places, there is no formal training program, or even role description, for paid direct support providers. One session participant observed that “a whole set of workers [are now providing] community care without insurance, without proper training, without the supports necessary to grow and thrive as professionals.” Another participant mentioned that paid caregivers may take direction from a referring or service-providing agency as much as from the individual with a disability, and “may not share the consumer’s understanding of the differing roles of the individual, the family and the formal service support system.”

Session participants were also concerned that family members or other informal caregivers may not realize that what they are doing is providing direct support services. Family members who do not recognize the significant caregiver role they play are unlikely to get training or support from which they might benefit. In particular, many family members are unaware that they may be eligible to receive financial and other assistance in order to provide caregiver services.

Finally, in one session, a participant raised a concern about the impact of closing the state’s training centers and other large institutions on the institutional caregiver workforce. Such institutions are large employers, and several participants expressed concern about workers losing their jobs and not being able to make the transition from providing institutional care to in-home services.

IV. Information for HHS Community Living Efforts

Participants in the Stakeholder Dialogues and Listening Sessions made the following suggestions to the Federal Listening Panel regarding ways to facilitate the creation of the relationships and infrastructure that enable these people with disabilities and seniors to live in an environment of their own choosing. Some of these changes could be made through the regulatory process, while others would require the enactment of legislation.


  • HHS should communicate and coordinate with the U.S. Department of Housing and Urban Development (HUD) on programs that affect the disability community. As noted, participants in the San Diego sessions pointed to a successful collaboration between the HUD and the Department of Veterans Affairs to prevent homelessness among veterans as a useful model for expanding community living options for seniors and people with disabilities. Participants also suggested using funds from HUD for housing modifications.
  • Build accessibility requirements into low-income housing tax credit programs.
  • Increase the 5 percent set aside for Section 504 of the Rehabilitation Act compliance to create additional accessible housing.
  • Revisit cluster housing arrangements with shared personal assistants and 24 hour on-call assistance (a model used in the 1970s in the early days of the consumer-based grassroots independent living movement).
  • Make additional housing vouchers available for people with disabilities to transition out of nursing homes or avoid going into nursing facilities in the first place.
  • For individuals who have periodic or episodic needs, seek solutions to assure that they would not automatically lose their home if they needed to go into a nursing home for a period of time.
  • Incorporate universal design requirements into new construction so that more accessible units become available as community living options.
  • Institute low-interest real estate loan rates for buyers who will take a specific number of low-income tenants.
  • Establish one-stop resource centers that can connect people with accessible housing when it becomes available.

Access to Services

  • Require nursing homes to have information available regarding Money Follows the Person options and resources.
  • Add dental services as a mandatory Medicaid service.
  • Offer tax credits for long term care insurance.
  • Facilitate partnerships that allow agencies to pool their resources and provide coordinated and more comprehensive services. Minimize the need for individuals to go to different agencies to piece together various services and supports.
  • Make more independent living centers, adult foster care programs, and services available for young people with disabilities. Expand drop-in and day centers to allow people to remain in the community.
  • The Community Living Assistance Services and Support (CLASS) Act will provide an opportunity for employees with qualifying disabilities to purchase long term care insurance. Because it is a brand new initiative, implementation will require a consumer education effort. Utilize community partners to begin the educational process that will be needed to get people signed up for the voluntary programs under the CLASS Act. Develop an implementation plan that will ensure consistency across states including consumer directed options in all states.
  • Educate the medical community to help enforce requirements that medical care providers and facilities and their equipment need to be accessible.
  • Create a regional clearinghouse for information and resources on access to disability services. Develop a best practices guide to encourage community living.
  • Coordinate with the Department of Education to increase the focus on youth in transition from school to work and/or youth seeking further education and community living options.
  • Coordinate funding streams for specialized transportation services to increase options for accessible transportation.

Caregiver and Direct Care Workforce

  • Permit direct payment to direct support providers via Medicaid waivers.
  • Create a professional campaign to recruit direct support providers. “How about offering an option like enlisting in the military, where individuals could do a two-year tour of duty as a direct support professional. It would be a national movement, almost like Uncle Sam saying, ‘We want YOU to be a direct support professional.’
  • Create a database that consumers can use to locate and hire direct support providers.
  • Raise wages and provide benefits to attract and retain a dependable caregiver workforce.