Resources

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Advocacy

  • Diverse Elders Coalition (DEC) advocates for policies and programs that improve aging in our communities as racially and ethnically diverse people; American Indians and Alaska Natives; and lesbian, gay, bisexual and/or transgender (LGBT) people. DEC produces original policy analysis and resources, speaks with policymakers and advocates to highlight the issues of our communities and share solutions, and works to ensure the needs and perspective of diverse elders are at the forefront of national and local conversations on aging.
  • Elder Justice Coalition – The National Center for State and Tribal Elder Justice Coalitions – Comprised of individuals and organizations, the coalition is a resource to Congress, the Administration, media, and the general public to raise awareness of elder abuse, neglect, and exploitation and help develop and advocate for national policies to end this crisis.
  • Gray Panthers Political Action Committee – Maggie Kuhn formed the Gray Panthers in 1970 after being fired from her job for the crime of turning 65. Named for the fearless activism of the Black Panther Party, the Gray Panthers have fought against ageism throughout the country. The Gray Panthers Political Action Committee supports politicians and initiatives that promote the interests of seniors and the general public. The PAC fights for Abortion Rights, Affordable Health care, Social Security and Medical preservation, the Age Discrimination Employment Act, Criminal Justice Reform, LGTBQ rights, environmentalism, and many other progressive issues. Voting is seniors’ greatest power. Their goal is to shape public policy at the local, state, and national level. Don’t let the pandemic does not reduce the voting power of older people.
  • REVUPMA.org – REV UP Massachusetts (Register! Educate! Vote! Use your Power!) is actively fighting for the fair and civic inclusion of people with disabilities in every political, social, and economic front. REV Up aims to increase the number of people with disabilities who vote
  • Senate roster of leadership and committee assignments for the 2021-22 Massachusetts Legislative Session
  • House roster of leadership and committee assignments for the 2021-22 Massachusetts Legislative Session

Aging

  • 2024 Elder Law Guide for Older Adults (15th edition) is the Massachusetts Bar Association’s resource guide on a wide range of legal issues affecting the lives of older adults.
  • Wise and Healthy Aging advances the dignity and quality of life of older adults through leadership, advocacy and high-quality, innovative services.
  • The Global Ageing Network is a community of organizations that provide services to older adults wherever they call home. They are leaders in long term care, senior housing, community based.
  • Robert N. Butler-Jack Rosenthal Age Boom Academy – Columbia University. Age Boom is a forum in which to train journalists about the complex health, social, and economic issues facing our aging population. Their goal is to engage and train working members of the media in current science and policies related to longevity.
  • New York Academy of Medicine Center for Healthy Aging is focused on improving critical elements of healthy living for older adults including
    • Social, physical, and economic participation
    • Positive perceptions of well-being, quality of life, and autonomy
    • Improved functional ability and minimized activity limitations
    • Excellent healthcare and services
  • The Harry and Jeanette Weinberg Center for Elder Justice has a mission to champion justice and dignity for older adults. Their multidisciplinary professional team brings together expertise in the law, therapeutic and social services and public health to identify existing knowledge and service gaps and develop nuanced techniques and strategies.
  • Justice In Aging is a national non-profit legal advocacy organization that fights senior poverty through law.
  • Harvard Study of Adult Development
  • Age-Friendly Public Health Systems – TFAH is working to strategically align the AFPHS initiative with other components of the Age-Friendly Ecosystem. Age-Friendly Health Systems is an initiative of The John A. Hartford Foundation and the Institute for Healthcare Improvement (IHI), in partnership with the American Hospital Association (AHA) and the Catholic Health Association of the United States (CHA), designed Age-Friendly Health Systems to meet this challenge head on. The goal of the initiative is to rapidly spread the 4Ms Framework to 20% of US hospitals and medical practices by 2020. The AFPHS logic model highlights the vision for developing age-friendly public health systems across the country. Age-Friendly Health Systems aim to follow an essential set of evidence-based practices; cause no harm; and align with What Matters to the older adult and their family caregivers.
  • Changing the Narrative – with the help of research by the FrameWorks Institue, Changing the Narrative has evolved into a leading national effort to end ageism, with educational workshops, advocacy and public campaigns engaging people in all 50 US states and countries on every continent.
  • Age Friendly Vibes offers age friendly cards, buttons, gifts, and more.
  • Center for Social and Demographic Research on Aging at UMass Boston’s Gerontology Institute has a mission to conduct applied research that informs communities as their populations become older demographically, including research on topics that impact older adults seeking to age in their communities.
    • The Elder Index is a national county-by-county measure of income needed by older adults to maintain independence and meet their daily living costs.
    • Demography of Aging is demographic resources produced for those interested in the wellbeing of Massachusetts’ and New England’s older adult population.
  • Aging and Climate Change Clearinghouse – Cornell University aims to be a central and trusted resource on the intersection of climate change and the rapidly increasing older population. To carry out this mission, the Clearinghouse gathers, disseminates, and stimulates research, real-world interventions, and policies to address the intersection of aging and climate change.
  • Healthy Aging and Resilient Places Lab, University of Utah envisions a future where all people live healthier lives in their communities; build resilience in the face of uncertainty; and have equitable access to neighborhood resources and opportunities that promote health and resilience across the lifespan.
  • Memory Loss: How to Improve Your Memory – A study released in November, 2021 found it’s best to mix it up when it comes to stimulating activities that stimulate the brain. The recent study at Simon Fraser University pulled data from the National Institute of Aging’s Health and Retirement Study.
  • The NGO Committee on Ageing – New York works to raise world awareness of the opportunities and challenges of global ageing. The Committee advocates within the United Nations community to further integrate ageing in UN policies and programs and encourages member states to include ageing needs in social and economic policy considerations.  The goal of the Committee is to further the United Nations mission of building a society for all ages.
  • USAging
    • Mission – USAging represents and supports the national network of Area Agencies on Aging and advocates for the Title VI Native American Aging Programs that help older adults and people with disabilities live with optimal health, well-being, independence and dignity in their homes and communities.
    • Vision – USAging believes that every person should be able to age with optimal health, well-being, independence and dignity in their homes and communities. To achieve this, we are committed to building a society that values and supports people as they age.
    • Work – USAging is the national association representing and supporting the network of Area Agencies on Aging and advocating for the Title VI Native American Aging Programs. Our members help older adults and people with disabilities throughout the United States live with optimal health, well-being, independence and dignity in their homes and communities.
  • Safe Havens – Safe Havens Interfaith Partnership Against Domestic Violence and Elder Abuse is an interfaith organization that promotes hope and justice for victims and survivors of domestic and sexual violence and elder abuse. Safe Havens empowers diverse faith communities and their local service providers to work together to end domestic and sexual violence and elder abuse. Vision: No one should have to choose between faith and safety. This is why Safe Havens works to build a world in which all people are treated with dignity and respect and in which domestic and sexual violence and elder abuse no longer exist. We envision a time when every religious and spiritual community can fully embrace their unique and vital role to support survivors, provide prevention education, and speak out with moral authority against abuse and the systemic oppressions and inequities that undergird abuse.
  • Elder Justice Coalition The nonpartisan coalition is 3,000 members strong, spanning all generations. Comprised of individuals and organizations, we are a resource to Congress, the Administration, media, and the general public to raise awareness of elder abuse, neglect, and exploitation and help develop and advocate for national policies to end this crisis. In February 2003, the Coalition was founded to coincide with the introduction of the original Elder Justice Act in Congress. The EJC had five founding member organizations:
    • The National Committee for the Prevention of Elder Abuse (NCPEA)
    • The National Academy of Elder Law Attorneys (NAELA)
    • The National Association of State Units on Aging (NASUA) The National Association of State Long-Term Care Ombudsman Programs (NASOP)
    • The National Adult Protective Services Association (NAPSA)
  • The Elder Index – The Elder Economic Security Standard™ Index (Elder Index), was developed by the Gerontology Institute at the University of Massachusetts Boston. The Elder Index is a measure of the income that older adults need to meet their basic needs and age in place with dignity. The Elder Index is specific to household size, location, housing tenure, and health status. It includes the cost of:
    • Housing
    • Health Care
    • Transportation
    • Food
    • Miscellaneous Essentials
  • Caring Across Generations Fighting against:
    • Unequal Access to Care
    • Excessive Institutionalization
    • Widespread Cultural Ageism
  • Age International – Based in the United Kingdom, Age International help older people living in some of the world’s poorest places to have improved well being and be treated with dignity.
  • Centre for Ageing Better Better is pioneering ways to make ageing better a reality for everyone, including challenging ageism and building an Age-friendly movement, creating Age-friendly employment and Age-friendly homes.
  • American Bar Association Commission on Law and Aging – The Commission on Law and Aging is an interdisciplinary body of experts in aging and law, including lawyers, judges, health and social services professionals, academics, and advocates, that work on a wide range of law related issues that affect our aging population. The Commission accomplishes its work through research, policy development, advocacy, education, training and through assistance to lawyers, bar associations and others working on aging issues.
  • Encore Boston – Mission & Vision: Encore Boston inspires and assists people over 50 to make a difference through work, service, and social action. As a diverse community, they bring together a variety of interests and expertise to end ageism and advance opportunities.With improved health, strength of purpose and longer lives, people over 50 will continue to contribute real value to the economy, communities, and society.
  • Age Friendly Public Health Systems – TFAH is prioritizing healthy aging and is working to encourage and incentivize state and local health departments to embrace older adult health as a core function. Partnering with state and local health departments and national stakeholders, TFAH is working to implement a public health framework as part of the Age-Friendly Ecosystem that is essential to improve the health and well-being of older adults.
  • National Center on Elder Abuse – Publications regarding Elder Abuse Prevention and Intervention. Publications are available in PDF format for the following topics:
  • The Sinclair Lab – Harvard Medical School, Blavatnik Genetics Institute – This research group is a world leader in the understanding of why we age and how to reverse it.
  • USAging represents and supports the national network of Area Agencies on Aging and advocates for the Title VI Native American aging organizations that help older adults and people with disabilities live with optimal health, well-being, independence and dignity in their homes and communities.
  • National Center on Elder Abuse (NCEA) provides the latest information regarding research, training, best practices, news and resources on elder abuse, neglect and exploitation to professionals and the public. Established by the U.S. Administration on Aging (AoA) in 1988 as a national elder abuse resource center, the NCEA was granted a permanent home at AoA in the 1992 amendments made to Title II of the Older Americans Act. The NCEA is one of 27 Administration on Aging-funded Resource Centers. Research shows that as many as two million elders are abused in the United States. The Administration on Aging recognizes that as a government, as a society and as individuals, we must increase our efforts to ensure that all older adults age with dignity and honor.
    • NCEA – Research – Synthesize and disseminate high quality research on elder abuse to encourage the translation of research into practice.
    • NCEA – Practice – Technical assistance tools, innovative approaches, and national resources to aid in the provision of direct services.
    • NCEA Public Policy – Understand, evaluate, and inform policy development to ensure public policy is better aligned with effective practices.
    • NCEA Education – Training and awareness materials to further the field for those interested in elder abuse identification and prevention.
  • Administration on Community Living – Profile of Older Americans 2020 is an annual summary of critical statistics related to the older population in the United States. Relying primarily on data offered by the U.S. Census Bureau, the Profile illustrates the shifting demographics of Americans aged 65 and older. It includes key topic areas such as income, living arrangements, education, health, and caregiving. The 2020 Profile includes special sections on COVID-19 and mental health. Excel data file and graphic display are available. Previous year profiles available 2005 through 2019.
  • Administration on Community Living – Commit to Connect – Resources for the aging and disability networks – Combating social isolation and loneliness in all communities
  • Department of Health and Human Services – User Guide for Older Adults Toolkit is intended for all organizations that communicate directly with the older adult community.
  • The Green House Project partners with senior living providers to create homes for older adults that demonstrate more powerful, meaningful, and satisfying lives, work, and relationships. They implement culture change as well as dementia education and training to create person-directed, relationship-rich living environments.
  • Hebrew Senior Life Research – Areas of focus are the Aging Brain, Mobility and Falls, Palliative Care Research, and Musculoskeletal Research
  • Joint Center for Housing Research of Harvard University – Aging – With the rapid aging of the US population, the need for affordable, accessible, and supportive housing suitable for older adults is set to increase. Research in this area focuses on the demographics of the older population; the supply of housing available to adults with functional limitations and disabilities; affordability problems; the links between housing, health, and community services; and the public and private responses to these challenges.
  • Institute for Healthcare Improvement (IHI) – COVID-19 Rapid Response Network for Nursing Homes (Requires free registration) – IHI, with support from The John A. Hartford Foundation, offers the COVID-19 Rapid Response Network for Nursing Homes to support nursing home leadership, staff, residents, families, and communities impacted by the COVID-19 pandemic. Access to webinars, online and print resources, links to relevant sites.
  • Massachusetts Healthy Aging Collaborative – Working to make Massachusetts a national leader in vibrant and age-friendly communities. The Collaborative has identified a two-part model to promote healthy aging and the delivery of elder services in Massachusetts through evidence-based programs and other health promotion programs to support healthy communities. Programs and services should reflect the diversity and heterogeneity of older adults across the state.
  • Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America’s 45 million seniors and their families navigate the health care system. Navigating Aging is part of the Kaiser Health News website.
  • Older Adults Technology Services – Find Low-Cost Internet Service in Your Area
  • Open Doors is a network of artists, activists and advocates motivated by community building, gun violence prevention and disability rights. At the center of this network are the Reality Poets—a group of current and former residents of an NYC long-term care facility, who are bonded through a shared mission to spread a message of realness, resilience, and healing.
  • Voices for Seniors – The mission of Voices For Seniors is to significantly improve the quality of life for our most vulnerable, elderly communities through grassroots initiatives and advocacy for protective legislation and reform. Voices For Seniors uses online resources and social media to change the public’s perspective on senior citizens, and to educate others about the shortcomings of nursing homes and current protective legislation.
  • World Health Organization (WHO) – Ageing – Comprehensive website with these components: Factsheets; Guidelines; Databases; WHO Resolutions; WHO Teams

Behavioral and Brain Health

  • The National Council for Mental Well Being is fighting for a stronger, better-funded, more integrated approach to mental health and substance use care.
  • Association of Developmental Disabilities Providers (ADDP) is a state-wide association that focuses exclusively on issues relating to developmental/intellectual disabilities, brain injury services and autism. ADDP is comprised of over 130 member organizations throughout Massachusetts
  • Brain and Life – The official publication of the American Academy of Neurology. The site offers a range of products that connect you with stories of people living with brain disease, the latest research, and perspectives on neurologic disorders and brain health that you won’t find anywhere else.
  • Me2/ (“me, too”) is the world’s only classical music organization created for individuals with mental illnesses and the people who support them. Me2/ serves as a model organization where people with and without mental illnesses work together in an environment where acceptance is an expectation, patience is encouraged, and supporting each other is a priority.
  • Association for Behavioral Healthcare (ABH) is a statewide association representing over eighty community-based mental health and addiction treatment provider organizations. Members are the primary providers of publicly-funded behavioral healthcare services in the Commonwealth, serving approximately 81,000 Massachusetts residents daily. Core Values:
    • Bringing hope and health to individuals and families by promoting recovery and resiliency.
    • Ensuring access to quality person-centered and outcome-oriented care that is clinically and cost effective.
    • Committing to securing essential resources, including training, education, and adequate salaries, for the development of a committed and stable workforce.
  • Massachusetts Older Adult Behavioral Health Network Blog – The Massachusetts Association for Mental Health collaborated with members of the existing MA Aging and Mental Health Coalition to strengthen and expand the Coalition’s membership and work under its new name, OABHN. The newly energized statewide advocacy network has three principal goals: 1) policy and advocacy; 2) workforce development; and 3) public education.
  • Judge David L. Bazelon Center for Mental Health Law‘s mission is to protect and advance the civil rights of adults and children with mental illness or developmental disabilities. We envision a society where Americans with mental disabilities live with autonomy, dignity, and opportunity in welcoming communities, supported by law, policy, and practices that help them reach their full potential.
  • Substance Abuse and Mental Health Services Administration – Disaster Distress Helpline provides 24/7, 365-day-a-year crisis counseling and support to people experiencing emotional distress related to natural or human-caused disasters. The Distressline now offers support via videophone for American Sign Language users.

Caregiving

  • Daughterhood is a community of people supporting each other in the challenges, realities, and joys of caregiving through connection, support, and education.
  • National Alliance for Caregiving is a non-profit coalition of national organizations who share a vision of a society that values, supports, and empowers family caregivers to thrive at home, work, and life. Its mission is to build partnerships in research, advocacy, and innovation to make life better for family caregivers. The Alliance conducts research, does policy analysis, develops national best-practice programs, and works to increase public awareness of family caregiving issues. Recognizing that family caregivers provide important societal and financial contributions toward maintaining the well-being of those they care for, the Alliance supports a network of more than 80 state and local caregiving coalitions through its advocacy collaborative and engages researchers committed to caregiving through its research collaborative.
  • Rosalynn Carter Institute for Caregivers champions the family caregiver by building cross-sector partnerships,  leading research projects and strategic initiatives, developing and implementing evidence-based programs,  and advocating for public policy – and we engage family caregivers every step of the way.
  • Care 4 the Caregivers aims to reduce caregiver burnout and build the resiliency of caregivers of children with disabilities by providing them with easy to access tools that focus on mindfulness, education, and community. Care 4 the Caregivers offers an informational space, an empowering environment and programs and services that help families strengthen and thrive. 
  • AARP Family Caregiving Resource Center – Extensive site with resources and links.
  • Administration on Community Living – Commit to Connect – The Commit to Connect campaign is a public-private partnership that is: building a nationwide network of champions to collaborate on solutions and to reach more people; developing an online, consumer-focused tool, or clearinghouse, that matches people who are socially isolated to customized suggestions for resources that can help them connect and engage; establishing critical partnerships in communities and across all levels of government; sharing successful initiatives that can be implemented in communities across the country.

Covid-19

Demographics / Statistics

Design

  • Center for Inclusive Design and Innovation – CIDI’s mission is to improve the human condition through equal access to technology-based and research-driven information, services, and products for individuals with disabilities
  • Community Aging in Place – Advancing Better Living for Elders (CAPABLE) addresses both function and cost. CAPABLE is a program developed at the Johns Hopkins School of Nursing for low-income seniors to safely age in place. The approach teams a nurse, an occupational therapist, and a handy worker to address both the home environment and uses the strengths of the older adults themselves to improve safety and independence. People with functional limitations and chronic conditions are more than four times more likely than the general population to be among the 5 percent costliest users of health services.
  • The Green House Project partners with senior living providers to create homes for older adults that demonstrate more powerful, meaningful, and satisfying lives, work, and relationships. They implement culture change as well as dementia education and training to create person-directed, relationship-rich living environments.

Disabilities

(see also – Specific Disabilities)

  • Disabled Parts is a growing archive of poetry, stories, photos and art about sexuality and intimacy, featuring disabled voices. We move past the question of “what is disabled sex?” and seek to build understanding and deepen connection with our bodies, ourselves, and each other.
  • Requipment, Inc. – Each year, hundreds of Massachusetts residents donate the home medical equipment and assistive technology they no longer use to REquipment. The devices are refurbished and reassigned to older adults and individuals with disabilities, including children and veterans.
  • Institute on Disability at University of New Hampshire – Through innovative and interdisciplinary research, academic, service, and dissemination initiatives, the IOD builds local, state, and national capacities to respond to the needs of individuals with disabilities and their families.
  • Disability Issues Newsletter is published quarterly and shares current information about the world of disability, new initiatives, and other helpful information to the disability community in Massachusetts. Read back issues and sign up for a subscription. Note: Sandy Novak, a Dignity Alliance Massachusetts member, is a member of the Editorial Board.
  • SoundPrint allows you to discover the quieter venues in your city. Using the app’s internal decibel meter, you can measure the actual noise level of any venue, which is then submitted to a SoundPrint database that anyone can access to find out if a certain venue is quiet or loud. SoundPrint was born for the hearing-impaired community, but even those with typical hearing can benefit. SoundPrint is also helpful for the blind, those with autism, or those who simply prefer quiet environments.
  • Ahoi! helps people who struggle with environmental obstacles in their community. It helps people to be confident that they can go out into the world successfully and know the places that work for them.
  • National Organization on Disability , founded in 1982, was the first organization in the United States to represent every person with a disability, regardless of particular needs or circumstances. To have a disability is to belong to a large extended community — one out of every four Americans fits the description — that includes immense diversity, but also common threads of shared experience. Our mission has always been to break down the barriers that fence people off from the wider community. Today, they focus the whole of our energy on eliminating the most wasteful and isolating of all those barriers: the artificial gulf that keeps tens of millions of people out of the productive workforce.  They envision a world where all people with disabilities enjoy full opportunity for employment, enterprise and earnings, and employers know how to make the most of the talents of persons with disabilities.
  • MassFamilies is a statewide, grassroots coalition of individuals with disabilities and/or chronic illnesses and their families. They believe that supports for individuals and families can be more flexible and better designed to respond to the actual needs people have. They are actively organizing families and individuals to use the power of our numbers to effect positive change.
  • Disability Economic Justice Collaborative is a first-of-its-kind initiative that brings together two-dozen leading disability advocacy organizations, Washington, D.C.-based think tanks, and top research organizations. The collaborative is committed to breaking the persistent link between disability and poverty, and to finally achieving economic justice for disabled Americans more than three decades after the Americans with Disabilities Act (ADA) became law. 
  • Sins Invalid is a disability justice-based performance project that incubates and celebrates artists with disabilities, centralizing artists of color and LGBTQ / gender-variant artists as communities who have been historically marginalized. Led by disabled people of color, Sins Invalid’s performance work explores the themes of sexuality, embodiment, and the disabled body, developing provocative work where paradigms of “normal” and “sexy” are challenged, offering instead a vision of beauty and sexuality inclusive of all bodies and communities. They define disability broadly to include people with physical impairments, people who belong to a sensory minority, people with emotional disabilities, people with cognitive challenges, and those with chronic/severe illness. They understand the experience of disability to occur within any and all walks of life, with deeply felt connections to all communities impacted by the medicalization of their bodies, including trans, gender variant and intersex people, and others whose bodies do not conform to our culture(s)’ notions of “normal” or “functional.”
  • American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities. As a national cross-disability rights organization, AAPD advocates for full civil rights for the over 60 million Americans with disabilities by promoting equal opportunity, economic power, independent living, and political participation.
  • ADA.gov/Olmstead
    • DOJ Olmstead Technical Assistance
    • DOJ Olmstead Enforcement by Circuit Court
    • DOJ Olmstead Enforcement by Case or Matter
    • Olmstead Press, Speeches & Testimony
    • DOJ Olmstead Enforcement by Issue
    • Filing an Olmstead Complaint
    • Faces of Olmstead
  • Mathemetica’s Center for Studying Disability Policy (CSDP) – Dedicated to advancing disability policy and programs is embodied in our Center for Studying Disability Policy, established in 2007. Multidisciplinary teams understand the complexities facing public- and private-sector leaders in designing and operating programs that serve people with disabilities, as well as the challenges faced by people with disabilities in interacting with those programs.
  • Hadley – The mission of Hadley is to create personalized learning opportunities that empower adults with vision loss or blindness to thrive – at home, at work, and in their communities. Founded in 1920 by William Hadley, an educator who lost his eyesight later in life, Hadley offers practical help, connection and support free of charge to anyone with a visual impairment, their families and professionals supporting them. Hadley provides online, large print, braille, and audio media, reaching all 50 states and 100 countries.
  • National Eye Institute (NEI) was established by Congress in 1968 to protect and prolong the vision of the American people. NEI research leads to sight-saving treatments, reduces visual impairment and blindness, and improves the quality of life for people of all ages. NEI-supported research has also advanced our knowledge of how the visual system—from the eyes to the brain—works in health and disease. NEI supports vision research through approximately 2,100 research grants and training awards made to scientists at more than 150 medical centers, universities, and other institutions across the country and around the world. NEI also conducts laboratory and patient-oriented research at its own facilities located on the NIH campus in Bethesda, Maryland.
  • The Lurie Institute for Disability Policy conducts multidisciplinary research on the needs, experiences, and policy priorities of people with disabilities. Our work covers a wide range of topics, including the experiences of parents with disabilities; policies addressing long-term services and supports for people with disabilities; and health and healthcare outcomes. The Lurie Institute houses two major federally funded programs of research: the National Research Center for Parents with Disabilities and the Community Living Policy Center. These programs focus on salient issues affecting people with disabilities and the communities around them to ensure the full integration of people with disabilities into society at large. 
  • Superfest Disability Film Festival is the longest running disability film festival in the world. Since it first debuted in a small Los Angeles showcase in 1970 it has become an eagerly anticipated international event—hosted by Paul K. Longmore Institute on Disability at San Francisco State. For more than 30 years, Superfest has celebrated cutting-edge cinema that portrays disability through a diverse, complex, unabashed, and engaging lens. Superfest is one of the few festivals worldwide that prioritizes access for disabled filmgoers of all kinds.
  • Paul K. Longmore Institute on Disability at San Francisco State University studies and showcases disabled people’s experiences to revolutionize social views. Through public education, scholarship and cultural events, the Institute shares disability history and theory, promotes critical thinking and builds a broader community.
  • Annual Disability Statistics Compendium , Annual Disability Statistics Supplement, and State Reports for County-level Data are web-based tools that pool disability statistics published by various federal agencies together in one place. When working on legislative and other matters relating to persons with disabilities, the Compendium, Supplement, and State Reports make finding and using disability statistics easier. The Annual Disability Statistics Supplement provides hundreds of additional tables breaking down the content found in the Compendium by age, gender, and race-ethnicity. The State Reports for County-level Data provide county-level statistics for each state complimenting the content found in the Compendium and Supplement.
  • Center for Dignity in Healthcare for People with Disabilities (CDHPD) is a virtual center with the goal of identifying and reducing life-limiting healthcare inequities for people with intellectual and developmental disabilities (IDD) by improving access to anti-discrimination medical protocols. The Center develops resources for healthcare professionals to understand the civil rights and support the needs of Americans with disabilities as they access routine and lifesaving care; and engage people with intellectual and developmental disabilities and their families to learn more about advocacy related to healthcare discrimination.
  • Center for Inclusive Design and Innovation – CIDI’s mission is to improve the human condition through equal access to technology-based and research-driven information, services, and products for individuals with disabilities.
  • Administration on Community Living – Commit to Connect – Resources for the aging and disability networks – Combating social isolation and loneliness in all communities
  • Disability Health Research Center at Johns Hopkins University – Shifting the paradigm from ‘living with a disability’ to ‘thriving with a disability’ and maximizing the health, equity, and participation of people with disabilities.
  • Georgia Institute of Technology Center for Inclusive Tech Design & Innovation – Archive of COVID-19 Accessible Materials for People with Disabilities Project – broadcast recordings, live transcripts, and other support documents
  • National Council on Disability (NCD) is an independent federal agency charged with advising the President, Congress, and other federal agencies regarding policies, programs, practices, and procedures that affect people with disabilities.
  • National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is the federal government’s primary disability research agency. Its mission is to generate new knowledge and to promote its effective use to improve the abilities of individuals with disabilities to perform activities of their choice in the community, and to expand society’s capacity to provide full opportunities and accommodations for its citizens with disabilities.
  • National Rehabilitation Information Center (NARIC) is the library of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). NARIC collects, catalogs, and disseminates articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDILRR. NIDILRR funds more than 250 projects each year that conduct research on a wide range of issues including technology, health and function, independent living, and capacity building

Emergency, including Shelters, Preparedness and Response

  • The Spring Alliance has a mission to create a network of regional elder abuse shelters and other similar service models with close working relationships, shared resources and technical assistance, common standards of excellence and a vibrant community of support.
  • Heat-Related EMS Activation Surveillance Dashboard – created in partnership between the HHS Office of Climate Change and Health Equity and the DOT National Highway Traffic Safety Administration, uses nationally submitted Emergency Medical Services (EMS) data to track EMS responses to people experiencing heat-related emergencies in the pre-hospital setting.

Employment

  • The National Direct Care Workforce Resource Center is the country’s premier online library of information on the direct care workforce. Updated and relaunched in 2020 by PHI, the National Direct Care Workforce Resource Center supports researchers, policymakers, practitioners, advocates, and journalists in better understanding—and building the knowledge base on—this critical workforce of 4.5 million home care workers, nursing assistants, and other direct care workers. What You Will Find:
    • The latest research, analysis, and information from the field on the direct care workforce—the largest-growing occupation in the country
    • Hundreds of reports, briefs, fact sheets, multimedia resources, and select journal articles published largely since 2010—a library of shareable materials that will grow over time
    • A range of search tools that allow users to easily identify resources by issue area, topic, publication type, date, region, and more
    • The ability for leaders in the field to submit their original items for consideration in the Resource Center—ensuring it remains current
  • Mentra is a neurodivergent-friendly talent platform that intelligently matches neurodiverse individuals with employers that value their strengths. Mentra is the grand prize winner of the Inclusive Pipeline for American Businesses Challenge competition in 2021. 
  • The Job Accommodation Network (JAN) is the leading source of free, expert, and confidential guidance on job accommodations and disability employment issues. Serving customers across the United States and around the world for more than 35 years, JAN provides free one-on-one practical guidance and technical assistance on job accommodation solutions, Title I of the Americans with Disabilities Act (ADA) and related legislation, and self-employment and entrepreneurship options for people with disabilities. JAN provides individualized consultation to assist:
    • Employers and their representatives seeking guidance on practical ways to engage in the interactive process, provide job accommodation solutions, and comply with Title I of the ADA;
    • Individuals with medical conditions and disabilities seeking information about job accommodation solutions, employment rights under the ADA, and self-employment and entrepreneurship opportunities; and
    • Family members and rehabilitation, medical, educational, and other professionals in their effort to support successful employment outcomes for individuals with medical conditions and disabilities.

General

  • Loneliness Awareness Week is dedicated to raising awareness of loneliness. It’s all about creating supportive communities by having open, honest conversations. Loneliness is a natural human emotion – we are hardwired to need social connections. By talking about it, we can support ourselves and others.
  • Assistant Secretary for Planning and Evaluation (ASPE) advises the Secretary of the Department of Health and Human Services on policy development in health, disability, human services, data, and science; and provides advice and analysis on economic policy. The ASPE leads special initiatives; coordinates the Department’s evaluation, research, and demonstration activities; and manages cross-Department planning activities such as strategic planning, legislative planning, and review of regulations. Integral to this role, the ASPE conducts research and evaluation studies; develops policy analyses; and estimates the cost and benefits of policy alternatives under consideration by the Department or Congress.
    ASPE is organized into five principal offices and several smaller ones.
  • Massachusetts Statewide Independent Living Council (MASILC) is a Governor appointed Council. Members include persons who are knowledgeable about centers for independent living and the services they provide. The Council includes representation of individuals with a range of disabilities from the various geographic areas within the Commonwealth of Massachusetts.
  • Coalition to Build Community and End Loneliness website is to ensure all residents of the Commonwealth feel connected to their community and enjoy a strong sense of social health. They do this by mobilizing local organizations, thought leaders, and other partners to join forces and use our collective resources and ingenuity for maximum impact. Convened by AARP Massachusetts, the Coalition consists of 110+ members representing 68+ organizations, including state- and city-level governments, nonprofits, academic institutions, advocacy groups, thought leaders, and other partners.
  • Private Equity Stakeholder Project has a vision to bring transparency and accountability to the private equity industry and empower impacted communities. The mission of the Private Equity Stakeholder Project is to identify, engage, and connect stakeholders affected by private equity with the goal of engaging investors and empowering communities, working families, and others impacted by private equity investments.
  • Dateability is a dating app designed for the disabled and chronically ill communities. People with disabilities and chronic illness often encounter ableism on other dating apps. We understand the unique circumstances that present when dating with a disability, which is why we created a safe and accepting space to create meaningful connections for people with physical, intellectual, and psychiatric disabilities…
  • Americans for Financial Reform is a nonpartisan, nonprofit coalition working to lay the foundation for a strong, stable, and ethical financial system.
  • Advance Directive for Dementia – How much medical care would you want if you had Alzheimer’s disease or another type of dementia? This form is free to download and use as an Alzheimer’s-specific living will.
  • Federal Trade Commission
  • Better Business Bureau Scam Tracker – You can search the scamtracker database using one or many options available under the “Lookup Scam By” section.
  • AARP Scams and Fraud website – The AARP Fraud Watch NetworkTM is a free resource for all. With AARP as your partner, you’ll learn how to proactively spot scams, get guidance from our fraud specialists if you’ve been targeted, and feel more secure knowing that we advocate at the federal, state, and local levels to protect consumers and enforce the law.
  • The Goldsen Institute, University of Washington is an innovation hub that researches vulnerable populations and creates interventions to improve their health, wellness, and longevity. The Goldsen Institute is dedicated to building a world where all ages thrive throughout their lives. Improvements in health, wellness, and longevity demand that we disrupt traditional intervention models, which necessitates new practices for how we live, work, and grow in our communities
  • UCSF Center for Vulnerable Populations (CVP) is dedicated to improving health and reducing disparities through discovery, innovation, policy, advocacy, and community partnerships. The CVP seeks to develop effective strategies to prevent and treat chronic diseases in communities most at risk. Beyond the local communities it serves, CVP is nationally and internationally known for its research in health communication and health policy to reduce health disparities, with special expertise in the social determinants of health, including literacy, language, food policy, poverty, and minority status, with a focus on the clinical conditions of pre-diabetes, diabetes, and cardiovascular disease.
  • Social Security Administration
  • Housing and Services Resource Center provides housing resources and homelessness services, behavioral and mental health services, independent living services and other supportive services, and others who are working to help people live successfully and stably in the community. The goal is to foster collaboration and cross-sector partnerships.
  • Alzheimers.gov – Information for individuals, caregivers, and professions.
  • Administration on Community Living – Grant Opportunities – ACL awards more than one billion dollars in grants, primarily to state and local governments, nonprofit organizations, institutions of higher education and small businesses. Some are awarded in accordance with formulas (mandatory grants) established in legislation, while others are awarded in a competitive process (discretionary grants).  ACL awards grants to states and organizations that provide services and supports for older adults and people with disabilities, conduct research, and develop innovative approaches to doing both. Learn more about the differences in grant types and how to apply.
  • NY Caring Majority –  A movement of seniors, people with disabilities, family caregivers, and domestic and home care workers from all across New York State.

Health and Healthcare

  • Massachusetts Health Council leads a broad group of stakeholders to foster a strong culture of health in Massachusetts. They promote policies and programs that enable healthier lifestyles, wellness, and preventative care so all people and their communities can thrive.
  • The Betsy Lehman Center fosters a statewide program of research, data analysis, and programming that engages and supports health care agencies, providers, and consumers working together to improve patient safety in care settings across the Commonwealth.
  • Organize is focused on reforms to increase the supply of transplantable organs every year, with particular focuses on health equity, patient safety, anti-monopolism, and anti-corruption.
  • The Society for Post-Acute and Long-Term Care Medicine – represents over 50,000 medical directors, physicians, nurse practitioners, physician assistants, and other practitioners working in the various post-acute and long-term care (PALTC) settings. The Society’s 5,500 members work in skilled nursing facilities, long-term care, and assisted living communities, CCRCs, home care, hospice, PACE programs, and other settings.
  • 2023 Annual Health Care Cost Trends Report and Policy Recommendations by the Massachusetts Health Policy Commission – Tenth annual report on health care costs in the Commonwealth.
  • MassHealth Redetermination Dashboard provides key metrics for the eligibility redeterminations process.
  • Trust For America’s Health (TFAH) – a non-profit, nonpartisan policy, research, and advocacy organization, leads the national age-friendly public health systems (AFPHS) movement with support from The John A. Hartford Foundation to promote the health and well-being of the nation’s older adults as a public health priority.
  • Centers for Health Information and Analysis – MA Hospital Profiles: CHIA has published the Massachusetts Hospital Profiles for HFY 2021. Hospital Profiles provide descriptive and comparative information on acute and non-acute hospitals based on hospital characteristics, services, payer mix, utilization trends, cost trends, and financial performance over a five-year period through HFY 2021. Hospital Profiles also includes a hospital profiles interactive dashboard that contains data visualizations that provide insight into the acute hospital industry for HFY 2021. Users can obtain more detailed information by hovering their cursor over data points. Please Note: The data used for these profiles is a compilation of payer and provider-submitted data sources, including hospital audited financial statements, hospital cost reports, hospital discharge data, and relative price data. For comparative purposes, acute hospitals are assigned to a cohort of similar hospitals. For non-acute hospitals, the cohorts are defined by services provided, and include behavioral health, rehabilitation, and chronic care. Specialty acute and non-acute hospitals are not identified with a distinct cohort:
    • Academic Medical Centers (AMCs)
    • Teaching Hospitals
    • Community Hospitals
    • Community-High Public Payer Hospitals
  • Age Friendly Public Health Systems – joint initiative between the Trust for America’s Health (TFAH) and The John A. Hartford Foundation. They have developed the Framework for Creating Age-Friendly Public Health Systems (AFPHS). This Framework is based on 6Cs that outline six areas of age-friendly public health activities:
  • Cure Rare Disease – Personalized gene therapies for patients who are more than numbers. We’re accelerating tailored, life-saving therapies for people with rare diseases who need them—now.
  • Age Friendly Public Health Systems – TFAH is prioritizing healthy aging and is working to encourage and incentivize state and local health departments to embrace older adult health as a core function. Partnering with state and local health departments and national stakeholders, TFAH is working to implement a public health framework as part of the Age-Friendly Ecosystem that is essential to improve the health and well-being of older adults.
  • The Mighty events are inclusive and accessible spaces that gather The Mighty community around the core ideas of empowerment, connection, decreasing stigma and isolation, teaching each other and of course, having fun with fellow Mighty Members.
  • Physical Activity Guidelines for Americans – Being physically active is one of the most important actions that people of all ages can take to improve their health. The evidence reviewed for this second edition of the Physical Activity Guidelines for Americans is clear—physical activity fosters normal growth and development and can make people feel better, function better, sleep better, and reduce the risk of a large number of chronic diseases. Health benefits start immediately after exercising, and even short episodes of physical activity are beneficial.
  • Centers for Disease Control and Prevention, National Center for Immunization and Respiratory Diseases (NCIRD) – Weekly U.S. Influenza Surveillance Report – A weekly influenza surveillance report prepared by the Influenza Division
  • Accessible Pharmacy Services for the Blind is a comprehensive, home delivery pharmacy service specializing in the needs of the blind and low vision community.
  • TheMighty.com – The Mighty is a comprehensive website, dealing with many kinds of disabilities and chronic health issues for all ages. Included are schedules of upcoming virtual events. Other features include information on how to use the website, including writing a column on any disability, rare disease, chronic illness, etc. Some interest groups include: Ask a Bipolar Advocate; Chronic Illness Support Group; Navigating PTSD. Access to the website is free; to get email alerts on new articles or events happening, a free subscription is required.
  • Center for Dignity in Healthcare for People with Disabilities (CDHPD) is a virtual center with the goal of identifying and reducing life-limiting healthcare inequities for people with intellectual and developmental disabilities (IDD) by improving access to anti-discrimination medical protocols. The Center develops resources for healthcare professionals to understand the civil rights and support the needs of Americans with disabilities as they access routine and lifesaving care; and engage people with intellectual and developmental disabilities and their families to learn more about advocacy related to healthcare discrimination.
  • Coalition for Serious Medical Care – Massachusetts e-MOLST Web Portal – The e-MOLST Web Portal supports providers in engaging in advance care planning with patients in the current, largely virtual care world. On the portal, clinicians and patients or surrogates can remotely complete and digitally sign MOLST forms. To sign up for the portal, send full name, licensure/role, institution, work address, work email, and phone number to: masssupport@vyncahealth.com. You will receive an email invitation to create a password and log in within two business days. This is a work in progress; feedback is requested.
  • Administration on Community Living – Commit to Connect – Resources for the aging and disability networks – Combating social isolation and loneliness in all communities
  • Convergence Center for Policy Resolution – Care for Older Adults
  • The Conversation Project – What Matters to Me: A Guide to Serious Illness Conversations – A workbook designed to help people with a serious illness get ready to talk to their health care team (doctor, nurse, social worker, etc.) about what is most important to them — to make sure that they get the care they want.
  • Conversations for Caring offers regional training for both professional and volunteer providers, who serve older persons, Veterans, persons living with disabilities of all ages, and their families. Monthly trainings address some of the most challenging issues facing providers who serve in community services settings and include but are not limited to presentations on addiction, mental/behavioral health, trauma, provider self-care, and homelessness. Trainings are offered by area service providers as well as professional members of medical establishments, regional colleges, and universities. Class participants can earn Continuing Education Credits in Social Work, Nursing, Licensed Alcohol and Drug Abuse Counselor (LADC), and Northeast Emergency Medical Services (NEEMS).
  • Days for Girls – Mission: providing powerful menstrual health solutions to help menstrual women and girls break the cycle of poverty and live their lives with dignity.
  • Honoring Choices Massachusetts – Health Care Planning Guide: A Road Map for Good Care Over Your Lifetime
  • Institute for Healthcare Improvement (IHI) – COVID-19 Rapid Response Network for Nursing Homes (Requires free registration) – IHI, with support from The John A. Hartford Foundation, offers the COVID-19 Rapid Response Network for Nursing Homes to support nursing home leadership, staff, residents, families, and communities impacted by the COVID-19 pandemic. Access to webinars, online and print resources, links to relevant sites.
  • Kaiser Health News – Look Up Your Hospital: Is It Being Penalized by Medicare? – You can search by hospital name or location, look at all hospitals in a particular state and sort penalties by year. Under programs set up by the Affordable Care Act, the federal government cuts payments to hospitals that have high rates of readmissions and those with the highest numbers of infections and patient injuries. For the readmission penalties, Medicare cuts as much as 3 percent for each patient, although the average is generally much lower. The patient safety penalties cost hospitals 1 percent of Medicare payments over the federal fiscal year, which runs from October through September.
  • Massachusetts Healthy Aging Collaborative – Working to make Massachusetts a national leader in vibrant and age-friendly communities. The Collaborative has identified a two-part model to promote healthy aging and the delivery of elder services in Massachusetts through evidence-based programs and other health promotion programs to support healthy communities. Programs and services should reflect the diversity and heterogeneity of older adults across the state.
  • Agency for Healthcare Quality and Research (AHQR) – National Healthcare Quality and Disparities Reports presents trends for measures related to access to care, affordable care, care coordination, effective treatment, healthy living, patient safety, and person-centered care. The report presents, in chart form, the latest available findings on quality of and access to healthcare, as well as disparities related to race and ethnicity, income, and other social determinants of health. Includes state level snapshots and various chartbooks. Report years available from 2003 through 2019.
  • Navigating Aging focuses on medical issues and advice associated with aging and end-of-life care, helping America’s 45 million seniors and their families navigate the health care system. Navigating Aging is part of the Kaiser Health News website.
  • The Network for Public Health Law provides leadership in the use of law to protect, promote and improve health and health equity. They provide non-partisan legal technical assistance and resources, collaborating with a broad set of partners across sectors to expand and enhance the use of practical legal and policy solutions.
  • Peterson-Kaiser Family Foundation Health System Tracker – How well is the U.S. health system performing? Explore a variety of indicators of health spending, quality of care, access, and health outcomes.

Home and Community Based Services (HCBS)

  • Massachusetts Task Force to End Loneliness and Build Community has a mission to ensure all residents of the Commonwealth feel connected to their community and enjoy a strong sense of social well-being, by mobilizing local organizations, thought leaders, and other partners to join forces and using collective resources and ingenuity for maximum impact.
  • Moving Health Home (MHH) is a coalition made up of stakeholders working to change federal and state policy to enable the home to be a clinical site of care. Today, we have an opportunity to shape the future of health care as policymakers, thought leaders, providers, health plans and patients absorb the lessons and experiences of the COVID-19 pandemic. “In collaboration with the MHH Board,  the MHH team advances a policy agenda focused on enabling clinical models of care centered around the home. Our members leverage  MHH  for advocacy,  policy development,  research,  and coalition building  –  implemented through convenings,  public events,  and strong ongoing relationships with Congressional and Administration leaders. “Moving Health Home works to advance home as a clinical site of care through federal and state legislative advocacy, education, research, and evidence to educate policymakers about new clinical models involving the home and new payment models that focus on high-value in-home care that meets patients where they are and leverages technology to drive efficiency and continuity of care.”
  • Housing and Services Resource Center provides housing resources and homelessness services, behavioral and mental health services, independent living services and other supportive services, and others who are working to help people live successfully and stably in the community. The goal is to foster collaboration and cross-sector partnerships.

Housing

  • Abundant Housing Massachusetts Vistion to create, sustain, and enhance: Abundant housing for all, A housing market that lets people move when they want, where they want, not when they have to, Communities with racially and economically diverse residents, Development patterns that facilitate low/no-carbon lifestyles, and Education on effective organizing tools to address our history of racial segregation
  • Grandmothers Village Project is a a nonprofit intentional community organization developed to house our BIPOC grandmothers/fathers in an environmentally safe and ecologically sound “Grandmothers’ Village.”
  • MASS Coalitions for the Homeless has a mission to eradicate homelessness from the Commonwealth of Massachusetts and ensure that everyone has a place to call home.
  • Tern Center for Housing Innovation (University of California at Berkley) has a mission to formulate bold strategies to house families from all walks of life in vibrant, sustainable, and affordable homes and communities.
  • Homemods.org is provided as a service of the Fall Prevention Center of Excellence (FPCE), a project of the University of Southern California (USC) Leonard Davis School of Gerontology. Home modification refers to converting or adapting the environment in order to make performing tasks easier, reduce accidents, and support independent living. Home modification, ranging from low-cost to more expensive adaptations, includes removing hazards (e.g., clutter, throw rugs), adding special features or assistive devices (e.g., grab bars, ramps), moving furnishings, changing where activities occur (e.g., sleeping on the first instead of second floor) and renovations (e.g., installing a roll-in shower). In some cases, modifying the home may also require repairs such as improved wiring to eliminate the need for dangerous extension cords or fixing loose stair treads.
  • Home Modification Toolkit: Lessons from the Field is designed to provide professionals with tools to enhance home modification availability and awareness for older adults and persons with disabilities. It is a collection of resources developed by the USC Fall Prevention Center of Excellence, with support from the Administration for Community Living.
  • Housing Navigator Massachusetts – A free online tool to search for affordable rentals statewide.
  • Community Aging in Place – Advancing Better Living for Elders (CAPABLE) addresses both function and cost. CAPABLE is a program developed at the Johns Hopkins School of Nursing for low-income seniors to safely age in place. The approach teams a nurse, an occupational therapist, and a handy worker to address both the home environment and uses the strengths of the older adults themselves to improve safety and independence. People with functional limitations and chronic conditions are more than four times more likely than the general population to be among the 5 percent costliest users of health services.
  • The Green House Project partners with senior living providers to create homes for older adults that demonstrate more powerful, meaningful, and satisfying lives, work, and relationships. They implement culture change as well as dementia education and training to create person-directed, relationship-rich living environments.
  • Joint Center for Housing Research of Harvard University – Aging – With the rapid aging of the US population, the need for affordable, accessible, and supportive housing suitable for older adults is set to increase. Research in this area focuses on the demographics of the older population; the supply of housing available to adults with functional limitations and disabilities; affordability problems; the links between housing, health, and community services; and the public and private responses to these challenges.
  • LeadingAge – Coronavirus Information for Affordable Housing
  • National Association of Social Workers – COVID-19 & Housing Resources
  • Visitability.org – Basic Access to Homes
  • National Health Law Program defends and fights to expand health and civil rights of those most in need and those with the fewest resources. They  strive to give a voice to low-income individuals and families in federal and state policy making, promote the rights of patients in emerging managed-care health care systems that too often put profits over people, and advocate for a health care system that will ensure all people have access to quality and comprehensive health care.
  • Massachusetts Right To Counsel Coalition – Legal help and access to the right resources before a court eviction can prevent families from homelessness, prevent illegal or unnecessary evictions, prevent displacement, and create a path to housing stability.
  • American Bar Association Commission on Disability Rights works to promote the ABA’s commitment to justice and the rule of law for people with mental, physical, and sensory disabilities, and to promote their full and equal participation in the legal profession.
  • American Bar Association Commission on Law and Aging‘s mission is to educate and advocate to protect the rights and dignity of adults as they age. The vision of the ABA Commission on Law and aging is a society where the rights of every adult as they age are acknowledged, respected, and protected. Their research has resulted in several resources for professionals and consumer
  • AARP Foundation Litigation – AARP Foundation conducts legal advocacy through its litigating arm, AARP Foundation Litigation, which advocates for systemic change in federal and state courts nationwide to advance the legal rights and interests of people 50 and older, particularly vulnerable individuals and those living with low income. Specifically, they file and support lawsuits that will have a significant impact on senior poverty by:
    • Reducing barriers to employment, including self-employment
    • Increasing access to public and private benefits
    • Protecting consumers by stopping unlawful business practices and securing refunds for those who lost money
    • Lowering out-of-pocket costs for key expenses, such as housing, food, and health care
    • Promoting more equitable outcomes across these areas   
    • Current Litigation Cases
    • Recent Amicus Cases
  • Prisoners’ Legal Services of Massachusetts – PSL’s mission is to challenge the carceral system through litigation, advocacy, client counseling, partnership with impacted individuals and communities, and outreach to policymakers and the public in order to promote the human rights of incarcerated persons and end harmful confinement.
  • American Bar Association Commission on Law and Aging is an interdisciplinary body of experts in aging and law, including lawyers, judges, health and social services professionals, academics, and advocates, that work on a wide range of law related issues that affect our aging population. The Commission accomplishes its work through research, policy development, advocacy, education, training and through assistance to lawyers, bar associations and others working on aging issues.

LGBT

  • OutstandingLife‘s mission is to improve the quality of life of LGBTQ+ older adults by creating opportunities for connectedness through free online programming.
  • SAGE – Advocacy and Services for LGBT Elders is the country’s largest and oldest organization dedicated to improving the lives of LGBT older people. Founded in 1978 and headquartered in New York City, SAGE is a national organization that offers supportive services and consumer resources to LGBT older people and their caregivers.

Long Term Services and Supports (LTSS)

  • AARP: Long Term Services and Supports – LTSS consists of a broad range of day-to-day help needed by people with long-term conditions, disabilities, or frailty. This can include personal care (bathing, dressing, toileting); complex care (medications, wound care); help with housekeeping, transportation, paying bills, and meals; and other ongoing social services. LTSS may be provided in the home, in assisted living and other supportive housing settings, in nursing facilities, and in integrated settings such as those that provide both health care and supportive services. LTSS also include supportive services provided to family members and other unpaid caregivers.
  • AARP LTSS Choices Series – AARP Public Policy Institute has launched LTSS Choices—a multifaceted project with an overarching mission to catalyze the transformation and modernization of the nation’s long-term care system into one that meets the dynamic needs and preferences of consumers and their families. This series of reports, blogs, videos, podcasts, and virtual convenings seeks to spark ideas for immediate, intermediate, and long-term options for reforming LTSS. It will showcase current models that could be ramped up now as well as potential innovative models that may take time to fully create. It will emphasize evidence-based solutions and identify regulatory and funding barriers that limit the widespread use of promising practices.
  • Long Term Care Discussion Group is an informal non-partisan networking group of long-term care (LTC) policy, provider, payer, academic and other stakeholders. The group meets monthly via an on-line webinar platform to hear from policymakers, practitioners, researchers, advocates and others regarding long term care and long-term service and support policy issues, research, education, and advocacy. Participants include stakeholders from the LTC finance industry, including both public sector and private payers such as LTC insurers, the provider community, researchers and academics, federal and state government agencies, Capitol Hill, consumer advocates and others.
  • National Center on Advancing Person-Centered Practices and Systems – Assists states, tribes, and territories to transform their long-term care service and support systems to implement U.S. Department of Health and Human Services policy on person-centered thinking, planning, and practices. It supports a range of person-centered thinking, planning, and practices regardless of funding source. Activities include providing technical assistance to states, tribes, and territories; establishing communities of practice to promote best practices; hosting educational webinars; and creating a national clearinghouse of resources to support person-centered practices. All NCAPPS webinars are recorded and archived on the website.
  • AARP Long-Term Services & Supports State Scorecard – The fourth edition of the LTSS State Scorecard, released in fall 2020, takes a multi-dimensional approach to measure state-level performance of LTSS systems that assist older adults, people with physical disabilities, and family caregivers. Unlike many other rankings that focus on a particular aspect of LTSS system performance, the Scorecard compares state LTSS systems across multiple dimensions, reflecting the importance and interconnectedness each has on the overall LTSS system.
  • The Claude Pepper Center – Using information and data from multiple sources to help inform policy makers, researchers, teachers, the media and the public about the health, long term care and income security challenges confronting the nation’s older citizens.
  • Institute for Healthcare Improvement (IHI) – COVID-19 Rapid Response Network for Nursing Homes (Requires free registration) – IHI, with support from The John A. Hartford Foundation, offers the COVID-19 Rapid Response Network for Nursing Homes to support nursing home leadership, staff, residents, families, and communities impacted by the COVID-19 pandemic. Access to webinars, online and print resources, links to relevant sites.
  • Massachusetts Executive Office of Health and Human Services – ARPA Funding Reports – Strengthening Home and Community Based Services and Behavioral Health Services Using American Rescue Plan (ARP) Funding
    • Two reports posted
      • Summary of ARPA Request for Information Proposals
      • Massachusetts Strategy for Supporting Home and Community Based Services using American Rescue Plan Act (ARPA) Funding
    • On April 16, 2021, the Commonwealth issued a Request for Information (RFI) to gather broad feedback and ideas from the community on how to best utilize enhanced funding available through Section 9817 of the American Rescue Plan Act (ARPA). In response, 95 individuals and organizations submitted a total of 203 proposals across four defined Topic Areas:
      • Topic Area 1: Access to HCBS services and supports, 69 responses
      • Topic Area 2: Technology and infrastructure investments to strengthen HCBS, 41 responses
      • Topic Area 3: Initiatives that provide opportunities to promote HCBS and emphasize high-quality, person-centered care Promotion of HCBS, 26 responses
      • Topic Area 4: HBCS workforce development, including recruitment and retention strategies, 67 responses
  • PHI works to transform eldercare and disability services by fostering dignity, respect, and independence—for all who receive care, and all who provide it. As the nation’s leading authority on the direct care workforce, PHI promotes quality direct care jobs as the foundation for quality care.

Medicare / Medicaid

  • The Massachusetts Medicaid Policy Institute (MMPI) – program of the Blue Cross Blue Shield of Massachusetts Foundation – is an independent and nonpartisan source of information and analysis about the Massachusetts Medicaid program, “MassHealth.”
  • Office of the Inspector General Exclusions Program, U. S. Department of Health and Human Services, provides information about OIG’s exclusion authority and activities.
  • Center for Medicaid and Medicare Services
    • No Surprises Act -See how new rules help protect people from surprise medical bills and remove consumers from payment disputes between a provider or health care facility and their health plan.
    • CMS Nursing Home Resource Center – The latest resources and guidance for people in nursing home and their caregivers
    • CMS Nursing Home Compare Website is posting information that will help consumers have a better understanding of certain staffing information and concerns at facilities. This information will be posted for each facility and includes:
      • Staff turnover: The percentage of nursing staff as well as the number of administrators who have stopped working at a nursing home over the past 12-month period.
      • Weekend staff: The level of weekend staffing for nurses and registered nurses at a nursing home over a three-month period.
    • CMS Services – Long-Term Services and Supports Rebalancing Toolkit – The toolkit provides background information, resources, and promising practices that support state efforts to rebalance Medicaid long-term services and supports (LTSS) in favor of home-and community-based services (HCBS).
    • Centers on Medicare and Medicaid Services Data Sets – This site gives you direct access to public data released by the Centers for Medicare & Medicaid Services (CMS). The goal is to make data readily available in open, accessible, and machine-readable formats.
      • For most available data, you can:
        • Download data in a variety of formats.
        • View and analyze data using interactive tools.
        • Access data through an Application Programming Interface, or API. An API lets developers connect other applications to data in real time.
      • Selected data sets:
  • Kaiser Health News – Look Up Your Hospital: Is It Being Penalized by Medicare? – You can search by hospital name or location, look at all hospitals in a particular state and sort penalties by year. Under programs set up by the Affordable Care Act, the federal government cuts payments to hospitals that have high rates of readmissions and those with the highest numbers of infections and patient injuries. For the readmission penalties, Medicare cuts as much as 3 percent for each patient, although the average is generally much lower. The patient safety penalties cost hospitals 1 percent of Medicare payments over the federal fiscal year, which runs from October through September.

Nursing Homes / Congregate Facilities

  • Residents’ Rights Month – October 2024 – an annual event designated by Consumer Voice to honor residents living in all long-term care facilities and those receiving care in their home or community. Residents have the right to self-determination and to use their voice to make their own choices. This year’s theme, The Power of My Voice, emphasizes self-empowerment and recognizes the power of residents being vocal about their interests, personal growth, and right to live full, enriching lives.
    Consumer Voice provides many more important resources.
  • California Advocates for Nursing Home Reform (CANHR) is dedicated to improving the choices, care and quality of life for California’s long term care consumers. Through direct advocacy, community education, legislation and litigation it has been CANHR’s goal to educate and support long term care consumers and advocates regarding the rights and remedies under the law, and to create a united voice for long term care reform and humane alternatives to institutionalization.
  • Attorney General’s Regulations on Long-Term Care Facilities (MA): 940 CMR 4.00: LONG TERM CARE FACILITIES (pdf) is designed to promote the protection, comfort, health and well-being of consumers of services provided by long-term care facilities, to be consistent with existing legal standards, and to be as responsive as possible to the constraints and administrative realities under which long term care facilities operate.
  • How Nursing Homes Hide Profits While Residents Suffer – Documentary film on YouTube. For-profit nursing homes get billions of dollars from taxpayers every year, while problems like understaffing and infection outbreaks never seem to go away. VICE News investigates how one company has gamed the system to hide its profits – while residents suffer.
  • AARP Nursing Home Covid-19 Dashboard – The AARP Public Policy Institute, in collaboration with the Scripps Gerontology Center at Miami University in Ohio, created the AARP Nursing Home COVID-19 Dashboard to provide four-week snapshots of the virus’ infiltration into nursing homes and impact on nursing home residents and staff, with the goal of identifying specific areas of concern at national and state levels in a timely manner. AARP’s Nursing Home COVID-19 dashboard has tracked five categories of impact since summer 2020, as well as vaccination rates of nursing home residents and health care staff, updated every month to track trends over time. 
  • AARP Nursing Home Hub – Extensive collection of news articles and advice columns on nursing home care in the U.S.
  • Center for Medicaid and Medicare Services
    • CMS Nursing Home Resource Center – The latest resources and guidance for people in nursing home and their caregivers
    • CMS Nursing Home Compare Website – Beginning January 26, 2022, the Centers for Medicare and Medicaid Services (CMS) is posting new information on the Care Compare website that will help consumers have a better understanding of certain staffing information and concerns at facilities. This information will be posted for each facility and includes:
      • Staff turnover: The percentage of nursing staff as well as the number of administrators who have stopped working at a nursing home over the past 12-month period.
      • Weekend staff: The level of weekend staffing for nurses and registered nurses at a nursing home over a three-month period.

Public Policy

  • Council on Criminal Justice – The Council works to advance understanding of the criminal justice policy choices facing the nation and build consensus for solutions that enhance safety and justice for all.
  • The White House Office of Public Engagement – The Office of Public Engagement works at the local, state, and national levels to ensure community leaders, diverse perspectives, and new voices all have the opportunity to inform the work of the President. Sign up to receive newsletters from the White House Office of Public Engagement.
  • American Progress Disability Initiative – promotes policies to
    • ensure disabled people of color and those most marginalized by ableism and other forms of oppression can participate in the economy and democracy
    • ensure an equitable economy for people with disabilities
    • center multi-marginalized identities
    • repair the social safety net for people with disabilities
    • advance disability-forward, pro-voter legislation
  • The Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School – The Petrie-Flom Center is currently led by Faculty Director Professor I. Glenn Cohen and Executive Director Carmel Shachar. The Center’s work generally falls into the following categories:
  • Mathemetica’s Center for Studying Disability Policy (CSDP) – Dedicated to advancing disability policy and programs is embodied in our Center for Studying Disability Policy, established in 2007. Multidisciplinary teams understand the complexities facing public- and private-sector leaders in designing and operating programs that serve people with disabilities, as well as the challenges faced by people with disabilities in interacting with those programs.
  • Future of Elder Care – Site contains various articles on reforming nursing homes and long-term care.
  • The Claude Pepper Center – Using information and data from multiple sources to help inform policy makers, researchers, teachers, the media and the public about the health, long term care and income security challenges confronting the nation’s older citizens.
  • Coalition for Serious Medical Care – Massachusetts e-MOLST Web Portal supports providers in engaging in advance care planning with patients in the current, largely virtual care world. On the portal, clinicians and patients or surrogates can remotely complete and digitally sign MOLST forms. To sign up for the portal, send full name, licensure/role, institution, work address, work email, and phone number to: masssupport@vyncahealth.com. You will receive an email invitation to create a password and log in within two business days. This is a work in progress; feedback is requested.
  • Institute on Community Integration (ICI) at the University of Minnesota focuses on policies and practices that affect children, youth, and adults with disabilities, and those receiving educational supports through collaborative research, training, and information-sharing activities. ICI’s values are based on Inclusion; Diversity; Equity; Self-determination; and Data-informed practice and policy. ICI is a designated University Center for Excellence in Developmental Disabilities, part of a national network of similar programs in major universities and teaching hospitals across the country. The Institute is home to over 70 projects and six Affiliated Centers, addressing disability issues across the lifespan
  • Massachusetts Department of Public Health – Crisis Standards of Care Planning Guidance for the COVID-19 Pandemic provides direction for the triage of critically ill patients in the event that the public health emergency caused by the COVID-19 pandemic creates a demand for in-patient critical care resources that outstrips supply. It seeks to ensure that every patient has equitable access to care from which they might benefit, and that tragically difficult decisions about the allocation of scarce in-patient care resources must be grounded only on evidence-based criteria that are clear, transparent, and objective; biological factors related only to the likelihood and magnitude of benefit from the medical resources; and should always minimize inequitable outcomes.
  • Massachusetts Executive Office of Health and Human Services – ARPA Funding Reports – Strengthening Home and Community Based Services and Behavioral Health Services Using American Rescue Plan (ARP) Funding
    • Two reports posted
      • Summary of ARPA Request for Information Proposals
      • Massachusetts Strategy for Supporting Home and Community Based Services using American Rescue Plan Act (ARPA) Funding
    • On April 16, 2021, the Commonwealth issued a Request for Information (RFI) to gather broad feedback and ideas from the community on how to best utilize enhanced funding available through Section 9817 of the American Rescue Plan Act (ARPA). In response, 95 individuals and organizations submitted a total of 203 proposals across four defined Topic Areas:
      • Topic Area 1: Access to HCBS services and supports, 69 responses
      • Topic Area 2: Technology and infrastructure investments to strengthen HCBS, 41 responses
      • Topic Area 3: Initiatives that provide opportunities to promote HCBS and emphasize high-quality, person-centered care Promotion of HCBS, 26 responses
      • Topic Area 4: HBCS workforce development, including recruitment and retention strategies, 67 responses
  • Massachusetts Healthy Aging Collaborative – Working to make Massachusetts a national leader in vibrant and age-friendly communities. The Collaborative has identified a two-part model to promote healthy aging and the delivery of elder services in Massachusetts through evidence-based programs and other health promotion programs to support healthy communities. Programs and services should reflect the diversity and heterogeneity of older adults across the state.
  • Massachusetts FY 2022 State Budget Process – House of Representatives Budget Version examines the Governor’s Proposal and releases its own recommendations for the annual budget for deliberation by the House of Representatives. Prior to release of the House Ways and Means Budget, Joint Ways and Means Committee budget hearings are held across the state.
  • Agency for Healthcare Quality and Research (AHQR) – National Healthcare Quality and Disparities Reports presents trends for measures related to access to care, affordable care, care coordination, effective treatment, healthy living, patient safety, and person-centered care. The report presents, in chart form, the latest available findings on quality of and access to healthcare, as well as disparities related to race and ethnicity, income, and other social determinants of health. Includes state level snapshots and various chartbooks. Report years available from 2003 through 2019.
  • The Network for Public Health Law – Addressing Chronic Conditions – The Network’s monthly reporter, Judicial Trends in Public Health (JTPH), highlights key court cases and relevant judicial trends in public health. The cases are organized under the JTPH topic, “Addressing Chronic Conditions.”
  • The Network for Public Health Law provides leadership in the use of law to protect, promote and improve health and health equity. They provide non-partisan legal technical assistance and resources, collaborating with a broad set of partners across sectors to expand and enhance the use of practical legal and policy solutions.
  • Northeastern University Center for Health Policy and Law – The Center’s institutes and programs include the Public Health Advocacy Institute (PHAI), the Program on Human Rights and the Global Economy (PHRGE), the Center for Health Policy and Healthcare Research, the Institute for Health Equity and Social Justice Research, the Domestic Violence Institute (DVI), and Health in Justice Action Lab as well as thee health-related clinics, Domestic Violence Clinic, Poverty Law and Practice Clinic and the Public Health Legal Clinic.
  • Pioneer Network is the national leader of the culture change movement, helping care providers to transition away from a medical, institutional model of elder care to one that is life affirming, satisfying, humane and meaningful. Pioneer Network advocates for a culture of aging in which individual voices are heard and individual choices are respected.
  • U.S. Dept. of Health and Human Services – We Can Do This – A Health and Human Services campaign to increase vaccine confidence while reinforcing basic prevention measures
  • White House Official Site – This commitment to accessibility for all begins with this site and our efforts to ensure all functionality and all content is accessible to all Americans. Our ongoing accessibility effort works towards conforming to the Web Content Accessibility Guidelines (WCAG) version 2.1, level AA criteria. These guidelines not only help make web content accessible to users with sensory, cognitive and mobility disabilities, but ultimately to all users, regardless of ability. Ongoing accessibility efforts work toward making WhiteHouse.gov as accessible as possible. The White House welcomes comments on how to improve the site’s accessibility for users with disabilities.
  • World Health Organization (WHO) – Ageing – Comprehensive website with these components: Factsheets; Guidelines; Databases; WHO Resolutions; WHO Teams

Rights

  • City Rights / Vida Urbana is a grassroots community organization committed to fighting for racial, social and economic justice and gender equality by building working class power. They promote individual empowerment, develop community leaders and build collective power to effect systemic change and transform society.

Specific Disabilities

  • The Alternate Limb Project – Founded by Sophie de Oliveira Barata, using the unique medium of prosthetics to create highly stylized wearable art pieces.
  • Hearing Loss Association of America (HLAA) is the nation’s leading organization representing consumers with hearing loss. The mission of HLAA is to open the world of communication to people with hearing loss by providing information, education, support, and advocacy.
  • Christopher and Dana Reeve Foundation is dedicated to curing spinal cord injury by advancing innovative research and improving the quality of life for individuals and families impacted by paralysis. Core beliefs:
    • We believe in empowering those affected by paralysis with the best knowledge, resources, and support.
    • We believe in the power of “we” not “me.” We believe you should not be alone.
    • We believe in cures that improve and enhance “lives well-lived.”
    • We believe that every story is unique, and we invite you to share yours.
    • We believe that people with paralysis have a right to a life with dignity.
    • We believe in a diversity of research done collaboratively and responsibly without impediment.
  • Asperger / Autism Network (AANE) – The Asperger/Autism Network (AANE) helps people with Asperger’s or similar autism spectrum and neurodiverse profiles build meaningful, connected lives. They provide individuals, families, and professionals with information, education, community, support, and advocacy — all in an inclusive atmosphere of validation and respect.

Technology

Transportation

  • Massachusetts Bay Transportation Authority
    • Address Massachusetts Bay Transportation Authority accessibility issues at the T by submitting an online Customer Support form on mbta.com. Under the Additional Details heading, be sure to check the box that says “This is an ADA/accessibility complaint/feedback”. You can also call Customer Support at 617-222-3200 (voice or VRS) or 711 (TTY).
    • MBTA Reduced Fare Program – Affordable, accessible transportation is important to older adults and people with disabilities. MBTA’s reduced fare program is open to people with disabilities, Medicare cardholders, people 65 and older. The reduced fares for those who qualify are $1.10 for subway rides, 85 cents for bus rides, and $30 for a monthly link pass, which entitles the holder to unlimited bus and subway travel. Lower one-way fares at about half price are also available on commuter rail and ferries.

Veterans

  • Bob Woodruff Foundation ensures that America’s impacted Veterans, service members and their families have access to the highest level of support and resources that they have earned for as long as they need it. BWF has partnerships in communities across the country. It identifies and invests in the best in-class programs that are serving the diverse needs of service members, Veterans, families, and caregivers in their communities. Since its inception in 2006, the Bob Woodruff Foundation has called for people to support the emerging and long-term needs of Veterans, including mental health, caregiver support, food insecurity and service-connected fertility issues. BWF’s investments in programs that have empowered Veterans, active-duty military and their family members has reinforced the message that the Bob Woodruff Foundation has “Got Your Six.”

Voting

  • Voting Accessibility Resources from ACL is a resource “hub” to make it easier for disabled people and older adults to find the voting resources they need.
  • Disability Voting Rights Week is hosted by the American Association of People with Disabilities’ REV UP Voting Campaign. There are over 38 million people with disabilities who are eligible to vote, but access barriers keep many from accessing their vote. Disability Voting Rights Week is about protecting the rights of people with disabilities to participate fully in our democracy.
  • REVUP Massachusetts – Register Educate Vote – increasing the number of voters with disabilities in MA.

Workforce

  • National Domestic Workers Alliance (NDWA) is a national advocacy organization focused on the needs and issues of  home care workers and others employed in domestic settings.
  • National Association of Health Care Assistants‘s mission is to elevate the professional standing and performance of caregivers through recognition, advocacy, education, and empowerment while building a strong alliance with health care providers to maximize success and quality patient care.
  • PHI works to transform eldercare and disability services by fostering dignity, respect, and independence—for all who receive care, and all who provide it. As the nation’s leading authority on the direct care workforce, PHI promotes quality direct care jobs as the foundation for quality care.
  • PHI Workforce Data Center – From wages to employment statistics, across states and nationwide, find the latest data on the direct care workforce.

Table of Contents

→ Index