HEALTH and LONG-TERM SERVICES

This page has information on long-term care issues and resources to help you live independently in your own home and community including links to:

Skip to page content
Home | Benefits | Civil Rights | Education | Employment | Federal Issues | Housing | Recreation/Travel/Entertainment | State/Local Issues | Technology | Transportation | News Index | Publications Index

News

Florida nursing home where eight deaths occurred had repeat safety violations, By Max Blau, September 13, 2017

This nonprofit equips people with disabilities with the tools needed for a hurricane like Irma, By Rebecca Ruiz, September 09, 2017

For Vulnerable Older Adults, a Harrowing Sense of Being Trapped, By Julie Turkewitz and Jennifer Medina, September 01, 2017

Inside the Organization Saving Disabled People During Hurricane Harvey, By David M. Perry, August 28, 2017

Serious Nursing Home Abuse Often Not Reported To Police, Federal Investigators Find, By Ina Jaffe, August 28, 2017

The Jerry Lewis Telethon Could Have Had a Happy Ending, By Mike Ervin, August 23, 2017

Often Missing In The Health Care Debate: Women’s Voices, By Anna Gorman and Jenny Gold, August 17, 2017

The Business of Managing Your PCAs, By Alex Ghenis, August 01, 2017

AARP: States Lag In Keeping Medicaid Enrollees Out Of Nursing Homes, By Phil Galewitz, June 14, 2017

Disability Advocates Fear Impact Of Medicaid Cuts In GOP Health Plan, By Elly Yu, June 06, 2017

The Bug Problem in Nursing Homes, By Lucette Lagnado, May 15, 2017

Severe Shortage Of Home Health Workers Robs Thousands Of Proper Care, By Judith Graham, April 26, 2017

America’s hidden horror: Sexual abuse in nursing homes and care facilities, By Mark Davis and Ian Cummings, April 23, 2017

Workers Who Give Care To The Homebound Often Can’t Afford To Get Their Own, By Shefali Luthra, March 31, 2017

The Pain That Never Stops, By Tim Gilmer, March 01, 2017

New Nursing Home Rules Offer Residents More Control Of Their Care, By Susan Jaffe, January 04, 2017

Caring For A Loved One At Home Can Have A Steep Learning Curve, By Taunya English, WHYY, December 12, 2016

Study: Many Caregivers Spend $7K Annually Out Of Pocket, By Rachel Bluth, November 14, 2016

Kansas assistance dogs change lives of both those who train them and those who get them, By Bill Blankenship, October 22, 2016

Industry clout remains a tough roadblock to negotiating lower Medicare prescription costs, By Stuart Silverstein, October 20, 2016

Autism Speaks No Longer Seeking Cure, By Michelle Diament, October 14, 2016

After Paralysis, A Life Of 'A Different 10,000 Things', From NPR All Things Considered "Been There" Series, October 11, 2016

A Practical To-Do List For Family Caregivers, By Judith Graham, September 29, 2016

Mylan's CEO Says Her Company Only Makes $100 Off of Each Epipen Pack, As If That Fixes Anything, By Jordan Weissmann, September 21, 2016

Study: Elderly’s Family Caregivers Need Help Too, By Rachel Bluth, September 13, 2016

How To Fight For Yourself At The Hospital — And Avoid Readmission, By Judith Graham, September 01, 2016

‘America’s Other Drug Problem’: Copious Prescriptions For Hospitalized Elderly, By Anna Gorman with photos by Heidi de Marco, August 30, 2016

Government-Protected ‘Monopolies’ Drive Drug Prices Higher, Study Says, By Sydney Lupkin, August 23, 2016

Mylan Raised EpiPen’s Price Before the Expected Arrival of a Generic, By Andrew Pollack, August. 24, 2016

Will Your Prescription Meds Be Covered Next Year? Better Check!, By Alison Kodjak, August 15, 2016

Elderly Hospital Patients Arrive Sick, Often Leave Disabled, By Anna Gorman with photos by Heidi de Marco, August 9, 2016

Busting Myths About Mental Illness, By Barbara Feder Ostrov, July 11, 2016

Poll: People unsure about ability to pay for long-term care, By Alejandra Cancino, June 01, 2016

Could Alzheimer’s Stem From Infections? It Makes Sense, Experts Say, By Gina Kolata, May 25, 2016

Community Living Skeptics Often Have Change Of Heart, By Shaun Heasley, May 17, 2016

Confined to Nursing Homes, but Longing (and Ready) for Home, By Katie Thomas, Sheri Fink and Mitch Smith, May 13, 2016

Nursing homes turn to eviction to drop difficult patients, By Matt Sedensky, May 08, 2016

Medical Errors Are No. 3 Cause Of U.S Deaths, Researchers Say, By Marshall Allen & Olga Pierce, National Public Radio (NPR), May 03, 2016

New Kansas Task Force Will Pursue Nursing Homes Providing ‘Grossly Substandard' Care, By Dan Margolies, Heartland Health Monitor, March 31, 2016

Big Financial Costs Are Part Of Alzheimer’s Toll On Families, By Jon Hamilton, NPR News, March 31, 2016

Training the Red Cross for Disaster, By Paul Timmons, New Mobility Magazine, March 01, 2016

Nursing Home Evictions Strand The Disabled In Costly Hospitals, By Ina Jaffe, National Public Radio (NPR), February 25, 2016

National Organizations Release Toolkit to Help Stakeholders Advocate for Strong Implementation of HCBS Settings Rule, From the Bazelon Center, January 26, 2016

Fight To Lower Drug Prices Forces Some To Switch Medication, By Alison Kodjak, National Public Radio (NPR), January 25, 2016

Topeka activist helps draft federal disability rights legislation, By Justin Wingerter, Topeka Capital-Journal, January 13, 2016

Do You Speak Health Insurance? It’s Not Easy., By Mark Zdechlik, Minnesota Public Radio, January 04, 2016

New 'dashboard' shows high cost of Medicare drugs, By Peter Sullivan, The Hill, December 21, 2015

Mental Health Courts Are Popular But Effectiveness Is Still Unproven, By Michelle Andrews, Kaiser Health News, December 15, 2015

New website looks to help Kansans sign up for ACA insurance, From WIBW TV, October 26, 2015

Suing A Nursing Home Could Get Easier Under Proposed Federal Rules, By Ina Jaffe, National Public Radio (NPR), October 19, 2015

Nursing Homes’ Residents Face Health Risks From Antibiotics’ Misuse, By Lisa Gillespie, Kaiser Health News, October 19, 2015

Invisible Disabilities Week 2015, By Guest Blogger Wayne Connell, Founder and President, Invisible Disabilities Association (IDA), Disability Blog, October 07, 2015

For Prescription Drug Makers, Price Increases Drive Revenue; By Joseph Walker, Wall Street Journal, October 05, 2015

Disability rights group stages protest outside governor's office, By Ben Lockhart, Deseret News, September 29, 2015

Federal court says Kansas must pay Medicaid workers minimum wage, By Dave Ranney, August 24, 2015

Can Health Care Be Cured Of Racial Bias?, By April Dembosky, KQED, August 20, 2015

Poll: Americans Favor Government Action On Drug Prices, From Kaiser Health News, August 20, 2015

During National Health Center Week, HHS announces an additional $169 million in Affordable Care Act funding to 266 community health centers, From the U.S. Department of Health & Human Services (HHS), August 11, 2015

CDC: 53 million adults in the US live with a disability, From the Centers for Disease Control and Prevention (CDC), August 03, 2015

Advocates Say Mental Health ‘Parity’ Law Is Not Fulfilling Its Promise, By Jenny Gold, Kaiser Health News, August 03, 2015

Home Health Agencies Get Medicare’s Star Treatment, By Jordan Rau, Kaiser Health News, July 16, 2015

New Regulations Would Require Modernizing Nursing Home Care, By Susan Jaffe, Kaiser Health News, July 13, 2015

Expand news listings

Return to top of page

Advocacy Organizations and Informational Resources

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 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.

The Community Living Policy Center (CLPC) works to identify methods of improving the long-term services and support (LTSS) system in the states, improve data collection on community living policy, and develop a strategic plan for community living research.

Deafwebsites.com is a compendium of online information for deaf awareness, deaf culture and deaf resources.

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.

HCBSadvocacy.org is a new platform to share information and resources regarding the new Home and Community Based Settings (HCBS) rule and stay informed about steps each state is taking to comply with the new rule. The website is a project of the Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities, and the National Disability Rights Network. It includes news and documents from states, advocacy resources, comment deadlines, and links to the final rule and official guidance. Send your news and resources to post to the site to hcbsadvocacy@gmail.com.

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.

Raising Expectations is AARP's Scorecard on Long-Term Services and Supports for People with Disabilities, including interactive data on state by state performance indicators

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.

Return to top of page

Publications

Abuse of People with Disabilities, Victims and Their Families Speak Out - This report by the Spectrum Institute Disability and Abuse Projectt is the first national survey of its kind that focuses on incidents of, responses to, and attitudes about abuse or crime victimization of children and adults with disabilities.

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, These reports with data from 2008 to 2013 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 2015 - 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. Last year's report -The Case for Inclusion 2014 (The Case for Inclusion - Past Reports).

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

Family Caregivers are Wired for Health by Susannah Fox, Maeve Duggan, Kristen Purcell, June 20, 2013 - This Pew Research Center survey finds the number of people caring for an adult or child with significant health issues is up from 30% of U.S. adults in 2010. The study finds that the activity of caregiving cuts across most demographic groups, but is especially prevalent among adults ages 30 to 64, a group traditionally still in the workforce. These caregivers are heavy technology users and are much more likely than other adults to take part in a wide range of health-related activities.

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)

Effective Communications for People with Disabilities: Before, During, and After Emergencies, May 27, 2014 - This report by the National Council on Disability (NCD) identifies barriers, facilitators, and successful practices to providing effective emergency-related communications.

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)

Guardianship and the Potential of Supported Decision Making With Individuals with Disabilities - The results of this TASH study show full guardianship as the most common recommendation made to parents of children with disabilities and alternatives, such as supported decision-making, as the least common recommendation made.

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.

Older Americans With a Disability: 2008−2012, Issued December 2014 - The report examines the demographic and socioeconomic characteristics, as well as the geographic distribution of the older population with a disability, with a focus on those in poverty or living alone. Data for this report come from the U.S. Census Bureau American Community Survey (ACS) 5-year estimates with interviews conducted in 2008 to 2012 pooled together.

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.

Prevalence of Disability and Disability Type Among Adults - United States, 2013; This report the Centers for Disease Control and Prevention (CDC) presents the percentage of adults with any disability and with specific types of disabilities by state and key demographic characteristics (e.g., sex, age, race/ethnicity).

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.

Separate and Unequal: States Fail to Fulfill the Community Living Promise of the Americans with Disabilities Act, July 18, 2013 - This U.S. Senate Health, Education, Labor and Pensions (HELP) Committee report provides an overview of the states’ ongoing struggle to fulfill the community living promise of the ADA and Olmstead.

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).

Home | Benefits | Civil Rights | Education | Employment | Federal Issues | Housing | Recreation/Travel/Entertainment | State/Local Issues | Technology | Transportation | News Index | Publications Index | Top