The Intersection of Foster Care and Mental Health, By Guest Blogger Stephanie Orlando, Member, National Council on Disability (NCD), with the assistance of Robyn Powell, NCD’s Attorney Advisor, Disability Blog, May 06, 2013
CIR’s California Watch again named finalist for Pulitzer Prize, From California Watch, April 15, 2013
A.D.H.D. Seen in 11% of U.S. Children as Diagnoses Rise, By Alan Schwarz and Sarah Cohen, New York Times, March 31, 2013
Seniors saved over $6 billion on prescription drugs as a result of the health care law, From the U.S. Department of Health & Human Services (HHS), March 21, 2013
One in 50 School-Aged Children in U.S. Has Autism: CDC, By Steven Reinberg, HealthDay, March 20, 2013
Disabled people may struggle to get specialty care, By Genevra Pittman, Reuters, March 18, 2013
Infections With 'Nightmare Bacteria' Are On The Rise In U.S. Hospitals, By Rob Stein, National Public Radio (NPR), March 05, 2013
Oral Health for Developmentally Disabled Often Overlooked, By Laird Harrison, Medscape Today, February 28, 2013
Focus on Mental Health Laws to Curb Violence Is Unfair, Some Say, By Erica Goode and Jack Healy, New York Times, January 31, 2013
Long-Term Care Ombudsmen Face Challenges To Independence, By Jenni Bergal, Kaiser Health News, January 27, 2013
For-Profit Nursing Homes Lead in Overcharging While Care Suffers, By Peter Waldman, Bloomberg, December 31, 2012
Sandy Hook shooting: Experts say Asperger's not associated with violence, By Stephanie Nano, Associated Press, December 16, 2012
Gerontology Expert: Revive CLASS Act To Help Pay Long-Term Care Bills, By Liz Seegert, Kaiser Health News, November 19, 2012
Medicaid personal-care programs are targets for fraud, investigators say, By Joe Eaton, Washington Post, November 14, 2012
Study: Voters With Special Needs Hold Untapped Influence, By Shaun Heasley, Disability Scoop, September 18, 2012
Often Overlooked In Nursing Home Admission Paperwork Is An Arbitration Agreement, By Michelle Andrews, Kaiser Health News, September 17, 2012
Study shows voters with disabilities face access barriers, By Gregory Korte, USA TODAY, August 09, 2012
Long-term Care Consumers Voice Their Opinions About Home Care, From the National Consumer Voice for Quality Long-Term Care (Consumer Voice), September 07, 2012
Aging baby boomers face home health care challenge, By John Seever, Associated Press, August 05, 2012
Words Can Wound: How The Media Describe The Mentally Ill And Disabled, By Kirsty Groff and May Wildman, Kaiser Health News, July 26, 2012
Glaxo Agrees to Pay $3 Billion in Fraud Settlement,By Katie Thomas and Michael S. Schmidt, New York Times, July 02, 2012
CMS' Proposed Definition of "Home and Community-based Settings, Information Bulletin #360 from Steve Gold's Treasured Nuggets of Information, June 08, 2012
Caring For Aging Relative: 'To Give Her A Good Life', From National Public Radio (NPR), June 05, 2012
States Encounter Obstacles Moving Elderly And Disabled Into Community, By Jenni Bergal, Kaiser Health News, May 24, 2012
Individual Health Policies Fall Short, a Study Finds, By Reed Abelson, New York Times, May 23, 2012
Your Stories Of Being Sick Inside The U.S. Health Care System, By Richard Knox and Patti Neighmond, National Public Radio (NPR), May 21, 2012
Paralyzed woman masters mind-controlled robotic arm,By Julie Steenhuysen, Reuters, May 17, 2012
Obama Administration: A Plan To Prevent Alzheimer’s By 2025, By Christian Torres, Kaiser Health News, May 15, 2012
U.S. health care spending ‘dwarfs’ other countries, By Kathryn Smith, Politico, May 03, 2012
ADAPT applauds issuance of key Affordable Care Act regulations, From ADAPT, April 25, 2012
Actor Noah Wyle, Disability Advocates Arrested In DC Protest, By Michelle Diament, Disability Scoop, April 23, 2012
Report calls for doubling nation's public health spending, By Julian Pecquet, The Hill, April 10, 2012
Say What? Most Insurance Covers Little Of The Cost Of Hearing Aids, By Michelle Andrews, Kaiser Health News, April 09, 2012
Physicians Wade Into Efforts To Curb Unnecessary Treatments, By Julie Appleby, Kaiser Health News, April 04, 2012
Comparing States on Access to Community-Based Services, Information Bulletin #354 from Steve Gold's Treasured Nuggets of Information, March 29, 2012
Why Does CMS Not Confront the Institutional Nursing Home Bias Against People With Disabilities, Information Bulletin #353 from Steve Gold's Treasured Nuggets of Information, March 23, 2012
Off-Label Use Of Risky Antipsychotic Drugs Raises Concerns, By Sandra G. Boodman, Kaiser Health News, March 12, 2012
Plaintiff challenging healthcare law went bankrupt – with unpaid medical bills, By David G. Savage, Los Angeles Times, March 08, 2012
CDC: 20% of Households Struggle With Medical Bills, By Cari Nierenberg, WebMD Health News, March 07, 2012
A Shift From Nursing Homes to Managed Care at Home, By Joseph Berger, New York Times, February 23, 2012
Considerations Regarding Managed Care, People with Disabilities and 1115 Waivers, Information Bulletin #352 from Steve Gold,s Treasured Nuggets of Information, February 21, 2012
Medicaid Managed Care and Long-Term Services and Supports, Information Bulletin #351 from Steve Gold,s Treasured Nuggets of Information, February 13, 2012
Fight for CLASS Act Continues, NCIL Advocates Needed Now!, From the National Council on Independent Living (NCIL), January 31, 2012
Calculating A Long-Term Care Policy: Will It Cover Your Needs, Can You Pay For It And Can You Afford Not To Have It?, By Caroline E. Mayer, Kaiser Health News, January 23, 2012
New Definition of Autism Will Exclude Many, Study Suggests, By Benedict Carey, New York Times, January 19, 2012
Reversal On Health Mandate Came Late For Gingrich And Romney, By Julie Rovner, National Public Radio (NPR), December 28, 2011
New Affordable Care Act Demonstration to Provide Care at Home for Medicare Patients, The Centers for Medicare & Medicaid Services (CMS), December 20, 2011
States Extraordinary Community-Based Services Dichotomy: DD vs. A/PD, Information Bulletin #347 from Steve Gold's Treasured Nuggets of Information, December 05, 2011
2010 MA Data - Progress Since the 1999 Olmstead Decision - How Is Your State Doing?, Information Bulletin #345 from Steve Gold's Treasured Nuggets of Information, November 28, 2011
Report: U.S. Outspends Other Countries On Health Care, By Julie Appleby, Kaiser Health News, November 23, 2011
Insurers 'terrified' of Supreme Court ruling on healthcare reform law, By Julian Pecquet, The Hill, November 22, 2011
Shortage Of ADHD Drugs Has Parents, Doctors Scrambling, By Richard Knox, National Public Radio (NPR), November 21, 2011
Abuses in assisted-living facilities come under Senate panel's spotlight, By Erika Bolstad, McClatchy Newspapers, November 02, 2011
Medicaid 1115 Waivers and People With Disabilities, Information Bulletin # 344 from Steve Gold's Treasured Nuggets of Information, November 01, 2011
Big-Name Drugs Are Falling Off The 'Patent Cliff', By Fred Mogul, WNYC, October 24, 2011
Health Tasks Delegated to Personal Care Community Workers, Information Bulletin # 343 from Steve Gold's Treasured Nuggets of Information, October 23, 2011
Seniors air their financial worries at annual AARP gathering, By Anna Gorman, Los Angeles Times, September 24, 2011
My Medicaid Matters Rally to Draw More Than a Thousand Advocates to Washington, D.C., From ADAPT, September 21, 2011
Advocates Prepare for the Largest Medicaid Rally in the Nation, From the National Council on Independent Living (NCIL), September 19, 2011
Join Us In D.C. to Help Put a Face to the “My Medicaid Matters” Rally!, From the National Council on Independent Living (NCIL), September 01, 2011
Ranks of uninsured Americans have soared in recession, By Diane Stafford, Kansas City Star, August 23, 2011
Senior Boom Creates A Demand For Home Health Workers, By Jessica Marcy, Kaiser Health News, August 15, 2011
"MY MEDICAID MATTERS" RALLY IN D.C. ON SEPT. 21, 2011, A Message from Steve Gold's Treasured Nuggets of Information, August 11, 2011
Advocates Allege Two-Faced Approach To Community Living, By Michelle Diament, Disability Scoop, August 09, 2011
Medicare, CMS, Hospitals, and Unnecessarily Institutionalization, Information Bulletin # 334 from Steve Gold's Treasured Nuggets of Information, June 24, 2011
Electrode Experiment Shows Promise as a Paralyzed Man Stands, By Denise Grady, New York Times, May 19, 2011
Health Insurers Making Record Profits as Many Postpone Care, By Reed Abelson, New York Times, May 13, 2011
Antipsychotic Drugs Called Hazardous for the Elderly, By Gardiner Harris, New York Times, May 09, 2011
Disability Rights Activists Are Even Invisible Getting Arrested on Capitol Hill, By Janine Jackson, Fairness and Accuracy In Reporting (FAIR), May 09, 2011
Autistic adult community condemns PBS NewsHour’s “Autism Now” program, From the Autistic Self Advocacy Network, April 27, 2011
ADAPT to Washington: "Stop De-funding Our FREEDOM!", From ADAPT, April 26, 2011
Send Comments to CMS on the Community First Choice Option!, From the National Council on Independent Living Weekly Advocacy Monitor, April 13, 2011
Drug Prices Rise Despite Calls for Cuts, By Jonathan D. Rockoff, Wall Street Journal, March 17, 2011
Report: Alzheimer’s caregivers number 15 million, By the Associated Press, March 14, 2011
State budget cuts decimate mental health services, By Kristen Wyatt, Associated Press, March 08, 2011
Study Finds Criminal Pasts of Nursing Home Workers, By Robert Pear, New York Times, March 02, 2011
Feds Unleash Billions For Community Living, By Michelle Diament, Disability Scoop, February 22, 2011
Home care tripped up by red tape, By J. Lester Feder, Politico, February 15, 2011
Motorcycle Helmets Reduce Spine Injuries, John Commins, HealthLeaders Media , February 10, 2011
Broad Racial Disparities Seen in Americans’ Ills, By Dr. Donald G. McNeil, New York Times, January 13, 2011
FDA Lowers Amount of Acetaminophen Allowed in Prescription Painkillers, By Amanda Gardner, Bloomberg Businessweek, January 13, 2011
In Loving Memory of Max Starkloff, From the National Council on Independent Living (NCIL), December 28, 2010
Illinois nursing homes escape paying full fines after residents harmed, By Sam Roe and Jared S. Hopkins, Chicago Tribune, December 20, 2010
A New Nursing Home Population: The Young, By Joseph Shapiro, National Public Radio (NPR), December 09, 2010
Help Your State Save Medicaid Funds and Comply with the ADA, Information Bulletin # 326 from Steve Gold's Treasured Nuggets of Information, December 01, 2010
Stunting disabled children's growth is 'morally permissible,' group says, By Vanessa Ho, Seattle Post-Intelligencer, December 01, 2010
Laura Hershey, 48, championed disability rights, By John Ingold, Denver Post, November 28, 2010
FEMA Encourages Seniors And People With Special Needs To Prepare For Winter, From the Federal Emergency Management Agency, November 24, 2010
3 big developments make AIDS outlook more hopeful, By Marilynn Marchione, Associated Press, November 23, 2010
HHS rules on medical-loss ratio match NAIC recommendations, By Mike Shields, KHI News Service, November 22, 2010
Bipartisan bill would accelerate state op-out provision in health law, By Julian Pecquet, The Hill, November 22, 2010
World Comparison Shows U.S. Healthcare Lacking, By Maggie Fox, Reuters, November 18, 2010
Hospital care fatal for some patients, By Rita Rubin, USA Today, November 15, 2010
States' Woes Spur Medicaid Drop-Out Talk, By Emily Ramshaw, The Texas Tribune and Marilyn Werber Serafini, KHN, November 12, 2010
Medicare's top doctor calls for more oversight funding after scathing dialysis exposé, By Julian Pecquet, The Hill, November 09, 2010
Families Fight To Care For Disabled Kids At Home, By Joseph Shapiro, National Public Radio, November 08, 2010
What’s a Pooled Trust? A Way to Avoid the Nursing Home, By Tara Seigel Bernard, New York Times, November 04, 2010
Health On The Hill - The Election's Impact On The Health Law, By Mary Agnes Carey, Kaiser Health News; Marilyn Werber Serafini, Kaiser Health News; Jackie Judd, Kaiser Family Foundation, November 03, 2010
With Newly-Elected Governors, GOP Gains Clout To Fight Health Reform Law, By Julie Appleby and Mary Agnes Carey, Kaiser Health News, November 03, 2010
Ind. parents told drop disabled kids at shelters, By the Associated Press, October 28, 2010
Health Care Reform Does Not Cut Medicare Benefits, From the Center for Medicare Advocacy, October 28, 2010
The Campaigns And Health Reform, By Mary Agnes Carey, Kaiser Health News; Eric Pianin, The Fiscal Times; Jackie Judd, Kaiser Family Foundation, Kaiser Health News' Health On The Hill for October 27, 2010
Republicans offer few healthcare alternatives, By Noam N. Levey, Los Angeles Times, October 27, 2010
Do the People Running for Congress Support Eliminating the Institutional Bias?, From the National Council on Independent Living (NCIL), October 26, 2010
Justice Dept. Pushes For Services To Move Patients Out Of Mental Hospitals, By Andy Miller, Kaiser Health News, October 21, 2010
Campaign Claims: Health Law Myths And Facts, By Julie Appleby, KHN and N.C. Aizenman, The Washington Post, Kaiser Health News, October 19, 2010
Justice Department Brokers Deal To End Institutionalization, By Michelle Diament, Disability Scoop, October 19, 2010
Docs on Pharma Payroll Have Blemished Records, Limited Credentials, By Charles Ornstein, Tracy Weber and Dan Nguyen, ProPublica, October 18, 2010
Studies Highlight High Medicare Costs For People In Nursing Homes, By Aimee Miles, Kaiser Health News, October 12, 2010
Report Says Government Should Do More To Keep Older Adults Out of Nursing Homes, From the SCAN Foundation, September 27, 2010
Legal Victories, Economic Defeats, By Clea Benson, CQ Weekly, September 27, 2010
Misuse of handicapped parking placards is widespread, By Annys Shin, Washington Post, September 26, 2010
Rebalancing Medicaid's Long-Term Care Expenditures: How Is Your State Doing?, Information Bulletin #323 from Steve Gold,s Treasured Nuggets of Information, September 22, 2010
Key Health Law Provisions Begin Sept. 23, By Michelle Andrews, Kaiser Health News, September 14, 2010
Comparing Olmstead Implementation Among Disabilities, Information Bulletin #322 from Steve Gold,s Treasured Nuggets of Information, September 07, 2010
FY 2009 Institution vs Community-Based Medicaid Services for Older and Younger Americans with Disabilities, Information Bulletin #321 from Steve Gold,s Treasured Nuggets of Information, August 31, 2010
AARP Says Brand-Name Drug Prices Up 8% in 2009, By Duff Wilson, New York Times, August 24, 2010
Older Americans and People with Disabilities - Bridging the Disconnect, Information Bulletin #320 from Steve Gold,s Treasured Nuggets of Information, August 23, 2010
US Military 'Overwhelmed' by Mental Health Problems of Soldiers, By Gregg Zoroya, USA Today, August 23, 2010
'Villages' Help Neighbors Age At Home, By Jennifer Ludden, NPR, August 23, 2010
Paul K. Longmore dies at 64; leading disability scholar and activist, By Valerie J. Nelson, Los Angeles Times, August 15, 2010
Improving Access to Home and Community-Based Services, Information Bulletin #319 from Steve Gold,s Treasured Nuggets of Information, August 12, 2010
White House ADA Celebration to be Streamed Live with Captioning, From the White House, July 26, 2010
Disabled See Progress, but Problems Persist, By Albert R. Hunt, New York Times, July 25, 2010
Mental illness costing military soldiers, By Gregg Zoroya, USA Today, July 23, 2010
"WHAT ABOUT BOB?" - USA Mental Health Agency May Cancel Journalist Robert B. Whitaker as Keynoter of "Alternatives 2010", By MindFreedom International News, July 21, 2010
AARP lobbies Congress for extra Medicaid funding, By Mike Lillis, The Hill, July 19, 2010
AIDS conference chief lashes out at world leaders, By Veronika Oleksyn, Associated Press, July 19, 2010
Cuts in Home Care Put Elderly and Disabled at Risk, By John Leland, New York Times, July 16, 2010
ADAPT is a national grass-roots community that organizes disability rights activists to engage in nonviolent direct action, including civil disobedience, to assure the civil and human rights of people with disabilities to live in freedom.
Assistance Dogs International, Inc. (ADI) is a coalition of not for profit organizations that train and place Assistance Dogs. The purpose of ADI is to improve the areas of training, placement, and utilization of Assistance Dogs as well as staff and volunteer education. If you want information about how to get an assistance dog, please go to Member Programs List and Links to locate a program that may be able to train a dog for you.
BrainLine.org is a comprehensive website where people can find authoritative, useful, and timely information and resources preventing, treating, and living with traumatic brain injury. BrainLine includes special sections for people with TBI, their families and friends, and the professionals who work with them. With new information featured each week, the site is designed to be a helpful place where people can gather information, learn about new research, and find a community of support and hope.
The Centers for Medicare & Medicaid Services (CMS), formerly known as the Health Care Financing Administration (HCFA), is the federal agency responsible for administering the Medicare, Medicaid, SCHIP (State Children's Health Insurance), HIPAA (Health Insurance Portability and Accountability Act), CLIA (Clinical Laboratory Improvement Amendments), and several other health-related programs.
The Center for Personal Assistance Services provides research, training, dissemination and technical assistance on issues of personal assistance services (PAS) in the United States.
The Coalition for Community Integration (CCI) is working to change federal policy so that Americans with disabilities and older Americans have a real choice in long term services and supports. The Coalition is working toward passage of the Community Choice Act (S 683/HR1670) which would eliminate the institutional bias in Medicaid.
This section of Disability.gov offers a wide range of information and resources to help people with disabilities live independently and participate fully in all aspects of community life.
The European Network on Independent Living (ENIL) is a European wide network of disabled people. It represents a forum intended for all disabled people, independent living organisations and their non-disabled allies on the issues of independent living and the independent living movement. ENIL and its member organisations believe that full citizenship and human rights for disabled people will only be achieved through increasing awareness, challenging traditional services and positive debate throughout Europe and internationally.
Families USA is a grassroots website for consumers about all kinds of health care coverage. They have several reports on various Medicaid programs and ideas on how to advocate for each state.
Independent Living Research Utilization (ILRU) provides research, education and consultation in the areas of independent living, the Americans with Disabilities Act, home and community based services and health issues for people with disabilities.
The Kaiser Family Foundation is non-profit, private operating foundation dedicated to providing information and analysis on health care issues to policymakers, the media, the health care community and the general public. The Foundation is not associated with Kaiser Permanente or Kaiser Industries.
Kaiser Health News (KHN) is a nonprofit news organization committed to in-depth coverage of health care policy and politics. KHN’s mission is to provide high-quality coverage of health policy issues and developments at the federal and state levels. In addition, KHN covers trends in the delivery of health care and in the marketplace. Their website also features daily summaries of major health care news from across the nation, as well as original videos and a broad range of commentary from contributing writers and experts.
The National Resource Directory provides wounded, ill and injured service members and veterans, their families, families of the fallen and those who support them with a web-based directory of valuable resources.
It delivers information on, and access to, the full range of medical and non-medical services and resources needed to achieve their personal and professional goals across the transitions from recovery to rehabilitation to community reintegration.
The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), individuals with disabilities, and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.
New Mobility Magazine encourages the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy.
NICHCY, the National Dissemination Center for Children with Disabilities, offers a vast repository of information on disabilities in children and youth; programs and services for infants, children, and youth with disabilities; IDEA, the nation’s special education law; and research-based information on effective practices for children with disabilities.
Ouch! is a website from the BBC that reflects the lives and experiences of disabled people. It has articles, blogs, a very busy messageboard and an award-winning downloadable radio show - The Ouch Podcast. It's aimed at those with a stakehold in disability: family, friends, professionals and, rather importantly, disabled people themselves - without whom all this would be a bit meaningless.
Resources for Free/Low-Cost Eye Exams & Eyeglasses - A listing of organizations who provide financial aid to people with vision problems for free or low-cost eye exams and eyeglasses.
Steve Gold's Nuggets is a website and listserve maintained by renowned disability rights attorney Steve Gold. It contains timely, useful information on topics of importance to people with disabilities, such as, housing, Medicaid, nursing homes and education.
TASH is an international leader in disability advocacy. Founded in 1975, TASH advocates for human rights and inclusion for people with significant disabilities and support needs – those most vulnerable to segregation, abuse, neglect and institutionalization. TASH works to advance inclusive communities through advocacy, research, professional development, policy, and information and resources for parents, families and self-advocates.
Through the Looking Glass (TLG) is a nationally recognized center that has pioneered research, training, and services for families in which a child, parent or grandparent has a disability or medical issue.
United Cerebral Palsy (UCP), one of the largest health charities in America, strives to ensure the inclusion of persons with disabilities in every facet of society—from the Web to the workplace, from the classroom to the community. They serve people with disabilities and their families through the development of forward-thinking programs, information and referral service, legislative advocacy, technology initiatives and research.
UsersFirst Mobility Map: On-line Tool for Wheelchair Consumers - UsersFirst recently launched Mobility Map, the only web-based tool of its kind to help consumers navigate the often confusing and complicated process of purchasing the proper wheelchair and mobility equipment. The Mobility Map provides people with disabilities guidance in getting wheelchairs and other mobility equipment that meets their unique needs. It offers tips on identifying your “wheelchair team” such as physicians and medical equipment suppliers, how to obtain a wheelchair evaluation, and where to find funding.
Working Together: Personal Assistance Training and You provides training modules, online tools, links and additional informational resources to help you to hire, train and work with your personal assistant.
Wrong Planet is the web community designed for individuals (and parents / professionals of those) with Autism, Asperger's Syndrome, ADHD, PDDs, and other neurological differences. We provide a discussion forum, where members communicate with each other, an article section, with exclusive articles and how-to guides, a blogging feature, and a chatroom for real-time communication with other Aspies.
2011 Alzheimer's Disease Facts and Figures is a report detailing the growing prevalence and escalating impact of Alzheimer’s and dementia on individuals, caregivers, families, government and the nation’s healthcare system.
Annual Disability Status Reports, from Cornell University, provide policy makers, disability advocates, reporters, and the public with a summary of the most recent demographic and economic statistics on the non-institutionalized population with disabilities. They contain information on the population size and disability prevalence for various demographic subpopulations, as well as statistics related to employment, earnings, and household income. Comparisons are made to people without disabilities and across disability types. Disability Status Reports and other statistics are available for each state, DC, and Puerto Rico at www.DisabilityStatistics.org.
A Balancing Act: State Long-Term Care Reform Research Report, July 2008 - This AARP Public Policy Institute research paper examines the extent to which states have balanced the delivery of Medicaid-funded long-term care (LTC) services and supports to people in their homes (or in more home-like settings in their communities) and in institutions. What is unique about this report is its primary focus on older people and adults with physical disabilities separate from other LTC populations, such as people with developmental disabilities. The paper explores what states have been able to accomplish under current Medicaid law and addresses the impact that federal policies have on the states’ ability to balance service delivery.
The Case for Inclusion 2013 - Since 2006, United Cerebral Palsy (UCP) has produced this annual, state-by-state ranking of how well state Medicaid programs serve Americans with intellectual and developmental disabilities (ID/DD). The Case for Inclusion ranks all 50 states and the District of Columbia (D.C.)-- not on their spending, but on their outcomes for Americans with ID/DD. This report shows how well each individual state is performing overall; how each state matches up against other states regarding key data measures; and, most importantly, the top performing states with policies and practices that should be replicated. This year, The Case for Inclusion also includes three case studies, looking at Massachusetts and Kansas for managed care, and Washington state for employment issues.
The Community Choice Act: A Vision for Attendant Services and Supports for the New Millennium is a brochure designed to assist advocates in promoting the Community Choice Act (S 683/HR 1670). The Community Choice Act (CCA) would give individuals who receive Medicaid and who are eligible for nursing facility services or other institutional care equal access to community-based services and supports. It includes background information, a summary of the legislation, answers to frequently asked questions and talking points on CCA.
Consumer Perspectives on Quality Home Care, September 2012 - This report by the National Consumer Voice for Quality Long-Term Care (Consumer Voice) seeks to understand quality care from a unique perspective; the individual receiving or accessing paid care services and support in their own home to determine how consumers define quality care, pinpoint needed care improvements and recommend policy actions to strengthen and provide more access to quality home care.
The Cost and Benefits of the Community Choice Act (CCA) for Middle Class Taxpayers (text) is a factsheet on an April 2010 Harris poll that shows the affordablity of the Community Choice Act and taxpayers' willingness to fund home and community based options in long-term services and supports.
Cutting Medicaid: Harming Seniors and People with Disabilities Who Need Long-Term Care by Families USA, May 2011 -This report assesses the human impact of proposed Medicaid cuts on those who need long-term care, as well as their families. It provides state-specific numbers on how many people would be affected by cuts, as well as on how the cuts would hurt families and state workers. | State Reports
Diabetes and SCI is the first in a series of educational brochures by the Rehabilitation Research and Training Center on Spinal Cord Injury (RRTC on SCI)focused on specific health concerns and issues of long-term spinal cord injury survivors. This brochure is intended for spinal cord injury survivors living in the community to help maintain their health.
Do Noninstitutional Long-Term Care Services Reduce Medicaid Spending?, Kaye, H.S., LaPlante, M.P., & Harrington, C. (2009) - Medicaid spending on home and community-based services (HCBS) has grown dramatically in recent years, but little is known about what effect these alternatives to institutional services have on overall long-term care costs. This analysis of state spending data from 1995 to 2005 shows that for two distinct population groups receiving long-term care services, spending growth was greater for states offering limited noninstitutional services than for states with large, well-established noninstitutional programs. Expansion of HCBS appears to entail a short-term increase in spending, followed by a reduction in institutional spending and long-term cost savings.
Easter Seals Siblings Study, November 2012 - How is life different for adults who have siblings with developmental disabilities, many who have assumed – or will assume – primary caregiving responsibilities for their brother or sister with disabilities? This Easter Seals study sheds light on the experiences of sibling caregivers as well as insight on the services and supports they need. (full report, pdf) (executive summary, pdf)
Estimating the Expense of a Mandatory Home and Community-Based Personal Assistance Services Benefit Under Medicaid; Mitchell P. LaPlante, PhD, H. Stephen Kaye, PhD, Charlene Harrington, PhD, University of California San Francisco - Personal assistance services (PAS) are essential for many people of all ages with significant disabilities, but these services are not always available to individuals at home or in the community, in large part due to a significant bias toward institutions in the Medicaid program. This study aims to provide an estimate of the expense of a mandatory personal assistance services (PAS) benefit under Medicaid for persons with low incomes, low assets, and significant disability.
Food Insecurity Among Households With Working-Age Adults With Disabilities, USDA Economic Research Report Number 144, January 2013, by Alisha Coleman-Jensen & Mark Nord - This report examines the effects of disabilities on household food security using newly available data on disabilities among adults from the U.S. Census Bureau’s Current Population Survey. The research considers both adults who are unable to work due to their disabilities, and adults with disabilities that do not necessarily prevent employment. (report summary)
Going Home - Is a booklet about home and community based options to institutional care. It explains how TILRC can help you get the healthcare services and supports you need in your own home and community. (printable version in rtf format)
Genworth Financial Long-Term Care National Survey: Key findings from a national survey of 800 likely voters, conducted August 14-16, 2007. - The survey found that nearly seven in ten Americans have not made any plans for their own, a spouse's or another relative's long term care needs. Yet, over half those surveyed have had a loved one who needed some form of long term care. The poll also found that close to 80 percent of the respondents want to see long term care included in the healthcare proposals offered by the presidential candidates. More than 80 percent of those surveyed also said that positions on long term care funding will be an important factor in deciding who to vote for in the 2008 election.
Guiding Principles: For Partnerships with Unions and Emerging Worker Organizations When Individuals Direct Their Own Services and Supports - The principles presented in this document are the result of intense, honest, and detailed discussions among leaders from the disability and labor communities. They provide a framework for how disability advocates can work with labor unions and emerging worker organizations to advance people’s ability to direct and control their own services and supports while also improving workers’ wages, benefits, and working conditions. (Cover Letter, Word | PDF)
Helping People with Long-Term Health Care Needs: An Insurance Program to Help People Afford Long-Term Services and Supports - April 2010, A FamiliesUSA fact sheet on the CLASS Act.
Helping People with Long-Term Health Care Needs: Improving Access to Home- and Community-Based Services in Medicaid - April 2010, A FamiliesUSA fact sheet on the Community First Choice State Plan Option.
The High Cost of Capping Federal Medicaid Funding, April 2011 - Deficit reduction commissions and some policymakers have recommended capping federal funding to some or all of the Medicaid program. This Fact Sheet examines the pros and cons of these proposed changes.
Home and Community-Based Services: Public Policies to Improve Access, Costs, and Quality, University of California, San Francisco, Harrington, C., Ng, T., Kaye, S. & Newcomer, R. (January 2009). - The focus of this report is to examine issues of access, cost, and quality for Medicaid HCBS programs. The trends in state Medicaid HCBS programs, target groups, participants, and expenditures are summarized. The paper shows the progress in providing Medicaid HCBS but also identifies many current problems and policies. Inequities in access to services and limited funds result in unmet needs for HCBS. HCBS cost issues have been a primary focus of policy makers and quality problems are largely not addressed. Policy recommendations are made to improve access, costs and quality at the federal and state levels in the future. (report - pdf/html) (summary - pdf/html)
House Republican Budget Plan: State-by-State Impact of Changes in Medicaid Financing by
John Holahan, Matthew Buettgens, Vicki Chen, Caitlin Carroll, and Emily Lawton, Kaiser Family Foundation, May 2011 - This analysis projects the state-by-state impact of converting Medicaid into a block grant and eliminating the planned expansion of the program by repealing the health reform law, as called for under the House Budget Plan. It finds that the plan would trigger major reductions in Medicaid program spending that could result in significant enrollment decreases compared to current projections, a shift with big implications for states, hospitals and tens of millions of low-income Americans who likely would wind up uninsured. (Study Overview)
ILRU Publications - ILRU has developed a variety of publications on independent living subjects, including a technical report series; monographs outlining the implications of health care reform for independent living; ADA resource materials available in both English and Spanish; directories of independent living centers and of independent living support materials; and handbooks providing background information on the independent living movement and on establishing and operating an independent living center.
INCITEMENT is the quarterly newsletter of the grassroots disability rights organization ADAPT. ADAPT's main issue is ending the institutional bias in feredral long-term healthcare policy so that people with disabilities can live in the community with real supports instead of being locked away in nursing homes and other institutions. Toward that end they are vigorously advocating for the passage of the Community Choice Act.
Keeping the Promise: Self Advocates Defining the Meaning of Community Living - a report developed by a partnership between the Autistic Self Advocacy Network (ASAN), Self Advocates Becoming Empowered (SABE), and the National Youth Leadership Network (NYLN) and funded by the federal government's Administration on Developmental Disabilities is intended to provide the Centers for Medicare and Medicaid Services (CMS) with a definition of "community" that captures the most vital elements of community life.
Easter Seals Living with Disabilities Study provides insight into the challenges facing adults with developmental disabilities and parents of adult children with disabilities, as compared to parents of adult children without disabilities. In every measure of comparison, the study shows parents of adult children with disabilities had significantly higher levels of concern for their children than parents of adults without disabilities. (Key Findings of the study)
Long Term Care in the New Health Law, Alliance for Retired Americans, May 07, 2010 - A factsheet on long term care changes in the Patient Protection and affordability Care Act, including the Community First Choice Option, exlenntion of the Money Follows the Person Rebalancing Demonsration Program and the CLASS Act.
Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood, a guide designed by the Office of Disability Employment Policy (ODEP), U.S. Department of Labor, through its Youth Technical Assistance Center, to help transition-age youth with significant disabilities as well as their family and friends navigate the complex world of PAS.(pdf) (doc)
Medicaid Home and Community-Based Services Programs: Data Update, December 2011- This report, based on annual data tracking conducted by the Kaiser Commission on Medicaid and the Uninsured and researchers at the University of California, San Francisco over the past ten years, presents a summary of the main trends to emerge from the latest (2008) expenditures and participant data for the three main Medicaid HCBS programs: (1) optional 1915(c) HCBS waivers, (2) the mandatory home health benefit, and (3) the optional state plan personal care services benefit. It also presents 2010 findings on the policies used in these three programs, including eligibility criteria, provider, service and waiting list data, as well as provider reimbursement rates for the home health benefit and the personal care service benefit
Medicare Atypical Antipsychotic Drug Claims for Elderly Nursing Home Residents, This report by the Depeartment of Health and Human Services (HHS) Office of the Inspector General (OIG) uncovers wide spread overuse and misuse of antipsychotic medications in our country's nursing facilities.
Money Follows the Person: A 2011 Survey of Transitions, Services and Costs, Kaiser Commission on Medicaid and the Uninsured, December 2011 - This report finds that 2011 marked a turning point for MFP as more states embrace rebalancing their long-term services and supports delivery systems to a home and community based model. With the help of critical services such as transition coordination, assistive technology, and affordable housing options, many more people will benefit from MFP in the years ahead. However, more attention to direct care workforce and affordable, accessible, integrated housing options will be important to help facilitate successful community transitions. (Case Study: Georgia’s MFP Demonstration | GA Profiles; Case Study: Ohio's MFP Demonstration (HOME Choice) | OH Profiles)
Money Follows the Person Demonstration Program: A Profile of Participants, By Debra J. Lipson and Susan R. Williams, Mathematica Policy Research, Inc., January 2011 - This report presents a profile of MFP participants who transitioned from institutions to qualified home or community-based residences from the start of the program through June 2010. It describes their demographic characteristics, the types of institutions in which they resided before their transition, and community living arrangements. It also discusses the reasons for discrepancies between the population eligible for the program and those who have actually enrolled so far, and recent changes that might narrow the differences in the future.
More Nonelderly Americans Face Problems Affording Prescription Drugs, Tracking Report No. 22, Laurie E. Felland, James D. Reschovsky - More children and working-age Americans are going without prescription drugs because of cost concerns, according to a new national study by the Center for Studying Health System Change (HSC). In 2007, one in seven Americans under age 65 reported not filling a prescription in the previous year because they couldn’t afford the medication, up from one in 10 in 2003. Rising prescription drug costs and less generous drug coverage likely contributed to the growth in nonelderly Americans—from 10.3 percent in 2003 to 13.9 percent in 2007—who went without a prescribed medication.
Net Effects of the Affordable Care Act on State Budgets, Commissioned by First Focus and authored by Urban Institute researchers Stan Dorn and Matthew Buettgens, this report assesses how state budgets will fare as a result of the Affordable Care Act. The report’s findings shed new light on potential savings for state Medicaid budgets which, even in a worse-case scenario, would outweigh costs associated with the health reform law.
On the Verge: The Transformation of Long Term Services and Supports, by Mike Cheek, Martha Roherty, Leslie Finnan, Eunhee (Grace) Cho - National Association of States United for Aging and Disabilities, Jenna Walls, Kathleen Gifford - Health Management Associates, Wendy Fox-Grage, Kathleen Ujvari - AARP Public Policy Institute, February, 2012 - Many states are on the verge of transforming the financing and delivery of long-term services and supports (LTSS). On the heels of the Great Recession, state policymakers are looking at solutions that include moving toward capitated, risk-based managed care for Medicaid enrollees with LTSS needs and focusing on better care and cost containment for people who are dually eligible for both Medicare and Medicaid coverage, the so-called “dual eligibles.” This report presents the findings from a state survey conducted in the fall of 2011. State aging and disability agencies and Medicaid agencies responded with LTSS information on programs for older individuals and adults with physical disabilities. Forty-eight states and the District of Columbia responded to the survey. (report summary)
The Prepared Lifestyle is a free 12-page booklet that provides easy-to-use checklists to guide you in preparing for seasonal and pandemic flu, severe storms, and other emergencies. This publication is produced by the Research and Training Center on Independent Living at the University of Kansas and the Kansas Department of Health and Environment, Bureau of Health Preparedness, with funding from the U.S. Department of Health and Human Services.
Raising Expectations: A State Scorecard on Long-Term Services and Supports for Older Adults, People with Physical Disabilities, and Family Caregivers, September 08, 2011 - This report by AARP’s Public Policy Institute, The Commonwealth Fund and The SCAN Foundation examines four key dimensions of state LTSS system performance: affordability and access; choice of setting and provider; quality of life and quality of care; and support for family caregivers. It assesses each state’s performance as a whole and on 25 individual indicators, some of which were measured for the first time.
State Mental Health Cuts: The National Crisis, March 2011 -this report documents the state-by-state funding changes for public mental health services since 2009 for youth and adults living with serious mental illness. These cuts are likely to worsen in 2011 and 2012. The report also describes how states have chosen to implement these funding cuts. The report concludes with policy recommendations, focused on the steps that should be taken to ensure that valuable public resources are spent wisely and effectively.
State Mental Health Cuts: The Continuing Crisis, November 2011- this report by the National Alliance on Mental Illness (NAMI) examines budgets approved for 2012 by state legislatures to document the nation's deepening mental health crisis. According to the report, Kansas ranked ninth amongst the top 10 states with the greatest proportion of cuts in mental health care from FY2009 to FY2012.
Taking the Long View: Investing in Medicaid Home and Community-Based Services Is Cost-Effective / Research Report March 2009— This AARP Public Policy Institute Insight on the Issues highlights research showing, over time, states that invest in home and community-based services (HCBS) experience slower Medicaid expenditure growth than states with low HCBS spending.
Testimony of Mitch LaPlante, Ph.D., Associate Professor, University of California,
San Francisco before the Senate Finance Committee Hearing on "Home and Community Based Care: Expanding Options for Long Term Care" Tuesday Sept 25th, 2007 at 10am, Dirksen Office Building G-50
10-Plus Years After the Olmstead Ruling, By Eric Carlson and Gene Coffey, National Senior Citizens Law Center, September 2010 - A new report from the National Senior Citizens Law Center, with support from The SCAN Foundation, calls on states to use the implementation of the Affordable Care Act to end Medicaid’s long-standing bias toward funding long-term care in institutional settings such as nursing homes
Valuing the Invaluable: 2011 Update - The Growing Contributions and Costs of Family Caregiving by Lynn Feinberg, Susan C. Reinhard, Ari Houser, and Rita Choula, AARP Public Policy Institute, July 2011 - This report updates national and individual state estimates of the economic value of family caregiving using the most current available data. The report also explains the contributions of family caregivers, details the costs and consequences of providing family care, and provides policy recommendations to better support caregiving families.
Weathering the Storm: The Impact of the Great Recession on Long-Term Services and Supports, This AARP Public Policy Institute study is the most comprehensive analysis to date on the budget cuts to both Medicaid and non-Medicaid funded long-term services and supports (LTSS) in each state. It also illustrates state-by-state how LTSS are financed. In addition, this study provides a very early snapshot of the likelihood of states pursuing some of the LTSS provisions within the Affordable Care Act (ACA).