JFActivist

A Guide for Supporting Vital Services at Upcoming HHS Meetings

by David Heymsfeld, AAPD Policy Advisor

“Open microphone” meetings are being convened in major cities by the US Department of Health & Human Services. These forums enable advocates and others interested in the implementation of the Affordable Care Act to comment in-person on the essential health benefits (EHB) – the core of health services which must be provided in health plans available through health insurance exchanges starting in 2014. 

The purpose of the meetings is to get public input on the requirements established by the 2010 health care reform act for the health care services which must  be covered by health insurance (“essential benefits”)

AAPD suggests that persons appearing at these hearings discuss specific services which they believe must be covered, based on their own knowledge and experience.

The types of services which could be discussed include:

• services needed to enable persons with significant disabilities to learn or keep the skills and functions needed for independent living and working in the community (the technical term is “habilation.”)  This could include occupational therapy, physical therapy, and speech therapy. The services could include training persons with disabilities in communication skills, medication management, personal hygiene skills, behavior management, and social skills  For example, teaching social skills to a person who developed schizophrenia at an early age; teaching people with developmental disabilities how to administer their medication safely or the fine motor coordination needed to dress themselves; and physical therapy to prevent a decline in function for a person with a congenital spine condition. These services could prevent the need for costly institutional care.

•  durable medical equipment needed to improve a persons mobility, hearing, vision, and the ability to communicate. This could include prosthetic limbs ,  orthopedic braces, durable medical equipment (such as power wheelchairs), and other assistive technology.

• Necessary services should not be subject to arbitrary and unreasonable limits, such as limits  on the number of visits, limits on the number of prosthetic limb per lifetime, or unreasonable limits on the costs of durable equipment.

 

Health Care Reform: Insurance Available for People with Preexisting Conditions

via AAPD (8.9.11):

Health Care Reform: Insurance Available for People with Preexisting Conditions

By David Heymsfeld, Policy Advisor, AAPD

On August 4th, AAPD participated in a meeting convened by the Department of Health and Human Services to increase awareness of a new program established by the health care reform act (the Affordable Care Act) to make insurance available at reasonable prices to persons who are unable to get insurance to cover preexisting conditions.

Under ACA ,after 2014 health insurance must cover pre-existing conditions. Before 2014, the law requires each State to establish a Preexisting Condition Insurance Program, or to participate in the federal program. The insurance is now available in all States at premiums of about $200 a month for persons under 35, and $400 a month for persons over 50.

The insurance will not be of interest to everyone. Persons on Medicaid and persons who are satisfied with their existing insurance will probably not want to buy PCIP policies. To qualify for PCIP, a person must show that they have been without insurance for 6 months, and that they have a preexisting condition.

Further information on the program and on policies available in particular states may be found at https://www.pcip.gov/

A Message from Immediate Past AAPD Chair, Tony Coelho

I wanted to alert you to an important upcoming opportunity to make your voice heard on health care policy.

Among the health reform law’s many important provisions was one that creates a new, independent program for comparative effectiveness research. For the first time, this program gives patients a voice, and a vote, to make sure the research gets done in a way that meets the needs of all patients.

Now we need to make our voices heard. I know first hand how easy it is for the health system to tell us as patients and people with disabilities what is “best” for each one of us. I also know how hard it is to change this system so that we can tell it what is best for each one of us.

That’s why I’m asking for your help. If we can make sure this new research institute gets it right, it could give us a lot of valuable information to guide our health care decisions. But if it isn’t done right, it will just feed a system that tells us what is best for us based on an “average” result.

Each one of us is different, with different medical needs, life circumstances, and health care preferences. The opportunity we have right now is getting the research agenda to reflect these differences rather than obscuring them. 

The new institute created to do this research – the Patient-Centered Outcomes Research Institute (PCORI), is holding a Board meeting on July 18-19 in Washington D.C. The Institute is run by a board of governors representing different parts of the health care system, including government, doctors, patients, medical product manufacturers, and insurance companies. As the institute gets up and running, it is vital to make sure the Board understands how important it is to work through open and transparent procedures that give full opportunity for meaningful input and involvement from our community and to define research in ways that are centered on the needs of patients and people with disabilities. You can find out more about this important issue in a one-page background document here.

Since becoming chairman of the Partnership to Improve Patient Care, I have been fighting to ensure patients have a voice in the national research agenda.  Please join me at PCORI’s meeting next week and help me make our voices heard. The meeting is at the Westin Georgetown Hotel, located at 2350 M Street, N.W., Washington D.C., on:

• Monday, July 18, 1:00pm ET to 5:30pm ET
• Tuesday, July 19, 8:00am ET to 11:45am ET

All sessions are open to the public, and those who would like to speak can sign up to speak on-site on the day of the event or email [email protected].

For more information on PCORI’s meeting and what you can do to help keep CER patient centered, call Sarah van Geertruyden at 202-494-5924, or email at [email protected]

 

Sincerely,

Tony Coelho

White House Hosts Disability Policy Town Hall and Announces NCD Nominations

From the White House:

Submit Questions for White House Virtual Town Hall Meeting

On Thursday, July 14th from 1:00 - 2:00 PM Eastern, Disability.gov will air a live "Virtual" Town Hall meeting to introduce the White House's top advisors on disability policy.

Do you have a question for President Obama's top disability policy advisors? Disability.gov is offering the chance to have it answered!

Participants during the virtual town hall who will be able to answer your questions include Kareem Dale, Special Assistant to the President for Disability Policy and Associate Director of the White House Office of Public Engagement; Jeffrey Crowley, M.P.H., Senior Advisor on Disability Policy and Director of the Office of National AIDS Policy at the White House; and Rebecca Cokley, Director of Priority Placement for Public Engagement, White House Presidential Personnel Office.

If you have a question that you would like to have answered during the Town Hall meeting, complete the form below by Wednesday, July 13th at 6:00 PM Eastern. Please understand that due to time constraints, not all questions that are submitted can be answered during the event...

>>> For More or to Submit Questions

From the White House (7.5.11):

President Obama Announces More Key Administration Posts

Today, President Barack Obama announced his intent to nominate the following individuals to key Administration posts:
 
•    Matan Koch, Member, National Council on Disability
•     Stephanie Orlando, Member, National Council on Disability...

Matan Koch, Nominee for Member, National Council on Disability Matan Koch is an Associate at Kramer, Levin, Naftalis, & Frankel LLP, where he focuses on Commercial Litigation and Advertising matters. He was born with Cerebral Palsy and has been actively involved in the disability community for many years. From 2001 until 2002, Mr. Koch served as the Vice Chairman of the New Haven Commission on Disabilities where he also chaired the Americans with Disabilities Act (ADA) Subcommittee. In addition, he has served as a member of the Union for Reform Judaism-Department of Jewish Family Concerns' Disability Task Force and currently serves on the union's Special Needs Camping Committee. While working in the Legal Division of Procter & Gamble, Mr. Koch was a member of the company's People with Disabilities Network. Mr. Koch also served on the board of Jewish Vocational Services of Cincinnati. He has a J.D. from Harvard Law School and a B.A. cum laude from Yale University where he served as the President of the student disability community.
 
Stephanie Orlando, Nominee for Member, National Council on Disability Stephanie Orlando is the Director of YOUTH POWER! of Families Together in New York State, a statewide advocacy network comprised of young people who have disabilities and experience in state child-serving systems. After receiving children’s mental health, special education and residential services herself, Ms. Orlando has become a strong advocate for youth with disabilities on county, state and national levels. Beginning in 2006, she served a term as Chairperson of the Youth Advisory Committee to the National Council on Disability. Ms. Orlando serves on the New York State Commissioners’ Committee on Cross-Systems Services for Children & Youth, the New York State Commissioner’s Advisory Panel for Special Education Services, the New York Mental Health Services Planning Council, and the Board of Directors of the Children’s Mental Health Coalition of Western New York. She received the Diana Vietz Award in 2008 from the National Council on Independent Living, the mpower Award in 2006 from Mental Health America (formerly National Mental Health Association) and the 2004 Erie County Executive Award for Disability Employment Awareness Month. Ms. Orlando earned her Bachelor of Arts in 2005 from the State University of New York at Buffalo...

>>> For the Full Press Release

Lawmakers Suggest Bipartisan Medicaid Reform - Community Choice

From the Hill (6.30.11):

Modernize Medicaid to better support people with disabilities
By Sen. Tom Harkin (D-Iowa) and Rep. Cathy McMorris Rodgers (R-Wash.)

This month marks the 12th anniversary of the Supreme Court’s landmark decision in Olmstead V. L.C., ruling that the needless institutionalization of people with disabilities is illegal discrimination.  Despite that decision, misguided Medicaid rules continue to force millions of people with disabilities to remain in nursing homes, against their wishes and at a much greater cost to taxpayers than many home and community-based alternatives. 

Today, as we seek ways to reduce budget deficits, we must seize on the opportunity to make our Medicaid dollars go farther while finally giving millions of individuals with disabilities one of the most fundamental of rights: the choice to live independently.

The Olmstead decision is sometimes called the Brown v. Board of Education for people with disabilities. It questioned the widespread practice of forcing people with disabilities to live in segregated settings in order to receive services, and it opened the door for people with disabilities to live full lives and participate in their communities.

Adhering to the ADA’s “integration mandate” not only allows people to live the same kinds of lives that the rest of us do, but actually saves money...

>>> For the Full Article

Take Action:

Call your Senators and Representatives and tell them to support the Community Choice, Medicaid reform that saves money and supports freedom and choice for people with disabilities.

Creative Budget Solutions: Invest in Medicaid Buy-In Programs

From AAPD (7.8.11):

AAPD-Boston University Research Project Reveals Medicaid Buy-In Programs' Strengths

This spring AAPD partnered with the Knowledge Dissemination Project at Boston University in an effort to synthesize and disseminate research on the effectiveness of state Medicaid Buy-In (MBI) programs.  MBI programs allow people with disabilities to “purchase” Medicaid health insurance with a monthly premium.  Research synthesized at Boston University indicates that not only do Medicaid Buy-In programs help people with disabilities transition into employment by giving them access to affordable health options while working, but the programs have measurable impacts on state budgets.   Medicaid Buy-In programs increase income tax revenue, stimulate local economies, reduce demand for social services, and reduce medical expenditures and health costs.

AAPD has launched web resource center to provide information on the Medicaid Buy-In program and the results of the research.   At www.aapd.com/medicaidbuyin activists can learn about the success of the programs in that MBI enrollees earn more money, work more hours, contribute more taxes and rely less on food stamps that those with disabilities who are not enrolled.  Activists can also learn how to take action to advocate for program improvements which include clarifying program logistics, coordinating with SSI work incentive programs and limiting grace periods for enrollees.

Take Action

AAPD believes that information from the success and challenges of MBI programs should inform policy considerations about how best to facilitate increased earnings and employment for people with disabilities. AAPD will be circulating more information on this topic through the Justice For All blog at www.jfactivist.com in the months to come.

Spread the Word

Download the below resources to share with family members, clients, policy makers and service providers.

>>> For a Fact Sheet Medicaid Buy-In (Word)

>>> For the Medicaid Buy-In Research Summary (Word)

>>> For a Medicaid Buy-In PowerPoint of Highlights

>>> For the Full Medicaid Buy-In Report (Word)

Appeals Court Upholds Affordable Care Act

via the LA Times (6.29.11):

In major test, appeals court upholds Democratic healthcare law

The healthcare law President Obama signed last year survived its first test before a federal appellate court Wednesday, as the 6th U.S. Court of Appeals in Cincinnati concluded that the law’s insurance requirement is constitutional.

“We find that the minimum coverage provision is a valid exercise of legislative power by Congress under the Commerce Clause,” the judges said in rejecting a legal challenge to the law by the conservative Thomas More Law Center.

The Thomas More lawsuit has not attracted as much attention as two other legal challenges being pushed by Republican state officials in Virginia and other states. Those suits are being reviewed by federal appellate courts in Atlanta and Virginia.

And few legal experts expect that the constitutionality of the Patient Protection and Affordable Care Act will be settled until it is reviewed by the U.S. Supreme Court, likely next year.

But the ruling Wednesday nonetheless marked a legal victory for the Obama administration and its Democratic allies, who have argued that Congress could require Americans to get health insurance starting in 2014...

>>>For the Full Article

3 Million PWD Eligible for Medicaid and Medicare: U.S. House Directs Focus Towards this Vulnerable Population

via AAPD (6.27.11):

Medicaid and Medicare Policy: U.S. House Focuses on Dual-Eligibles

by Julia Feinberg, AAPD Policy Intern

On June 21, 2011, AAPD learned that the U.S. House Energy and Commerce Subcommittee on Health held a hearing to discuss “Dual-Eligibles: Understanding This Vulnerable Population and How to Improve Their Care.”  This hearing focused on restructuring Medicare and Medicaid to be more effective and cost efficient for the 9 million Americans who qualify for both programs, beneficiaries commonly referred to as dual-eligibles.  

Of these 9 million dual-eligibles, one third, or three million are people with disabilities.  About two-thirds are elderly people.  43 percent of dual-eligibles have at least one mental or cognitive disability, while 60 percent have multiple chronic conditions.  AAPD is very concerned about the three million people with disabilities who are dual eligibles as current discussions focus on capping, cutting or otherwise limiting the amount of funds both these programs receive.

The House Subcommittee on Health is chaired by Joe Pitts (R-PA) and the Ranking Member is Frank Pallone (D-NJ).   Subcommittee chairman Pitts said, in his opening statement, “Dual eligibles are unique.  …. more than half of dual eligibles live below the poverty line … [and] nineteen percent of dual eligibles live in an institutional setting.” Pitts added that dual-eligibles “are also more likely to be hospitalized, to go to emergency rooms, and to require long-term care than other Medicare beneficiaries.” Citing to the Kaiser Foundation statistics he said “ ... dual eligibles – who make up only 15 percent of Medicaid enrollment – consume 39 percent of total Medicaid spending.”

Ranking Member Pallone said “Congress and this Committee are increasingly concerned about the rising cost of Medicare health care coverage for the 45 million elderly and disabled Americans and Medicaid’s 55 million poor patients. So what better place to explore, understand and address than the sickest and most expensive populations to cover.” Pallone also said, “But we mustn’t set a price tag on their care nor should we shape policy with the goal of only saving money.”

Melanie Bella, Director of the Federal Coordinated Health Care Office Centers for Medicare and Medicaid Services (CMS) said benefits were provided totaling $120 billion in 2007 and this is increasing. This amount is twice as much as Medicaid spent on the 29 million children it covered that year.

Bella explained that since Medicare and Medicaid were designed each as individual programs that is the cause of many problems today.  Since the two programs were not designed to be readily compatible, it is difficult for beneficiaries to navigate both sets of requirements, often resulting in fragmented and sub-optimal treatment, she said.

Bella said that CMS is working to make the two programs more user-friendly for dual-eligibles.  These initiatives focus on patient-centered medicine that would hopefully lower costs through preventing or avoiding costly interventions.  CMS hopes to do this through better state and federal coordination, learning from patient focus groups, and state-wide experimental initiatives that could be scaled to the national level if successful.

Four representatives from state and national programs that are currently providing medical coverage to dually eligible beneficiaries also spoke. These programs were presented as examples of how to solve the problems faced by beneficiaries who are dually eligible.   

Billy Millwee, Associate Commissioner for Medicaid/CHIP, from the Texas Health and Human Services Commission spoke about a Texas state program called STAR+PLUS.  The program features integration of acute care and long term support services, which Medicare and Medicaid currently do not provide.  Additionally, STAR+PLUS partners with medical providers that take full financial and well-being responsibility, using financial incentives to lower overall costs.

Robert Egge, Vice President of Public Policy from the Alzheimer's Association, discussed the need for more support of unpaid caregivers and simplification of the Medicare and Medicaid systems.  He urged the Subcommittee to remember that a large portion of the dual-eligible population has Alzheimer’s or dementia of some sort.  In order for participants to have cohesive and comprehensive care, they must be able to easily navigate the medical system, he said.

President and Chief Executive Officer, Shawn Bloom, from National PACE Association, or the Program of All-inclusive Care for the Elderly outlined how and why her organization was considered the “gold standard” by government and private evaluations.  Their programs are focused on community-based support that keeps the older population, above 65, out of nursing homes for as long as possible. She said that through patient-centered medicine -- as Bella advocated for -- PACE cuts costs while raising quality of care.  Significantly, Bloom asked the Subcommittee to provide resources for dual-eligibles who are under 65 years of age, such as people with disabilities, to participate in PACE programs.

Lastly, Denise Levis Hewson, Director of Clinical Programs and Quality Improvement from Community Care of North Carolina (CCNC), emphasized the importance of local, personal care.  CCNC functions by having the patient’s primary care physician direct all of his or her medical care.  By having the primary care physician at the center, care is cohesive and comprehensive.  Hewson stated her program “achieves ‘the triple aims’ of improving the health care of the dual population, improving the quality, access and reliability of care, and reducing the costs of care.”  This appeared to be the goal of Subcommittee and panel members alike.

Outlook: It is unclear how this hearing will affect future policy changes in Medicare and Medicaid although it appears CMS could sponsor more initiatives or make national some of the newer approaches.  However, disability advocates note that any federal entitlement programs that are expanding are being looked at very closely in the current conversations about the deficit, the debt limit and the budget for 2012.

To review the statements at the hearing and to see a video of hearing (not captioned), go to website at http://energycommerce.house.gov/hearings/hearingdetail.aspx?NewsID=8707

For more information on “dual eligibility” visit CMS website at http://www.cms.gov/medicare-medicaid-coordination/

Questions:  

1.      If you are, or know someone who is, a beneficiary of both Medicare and Medicaid and you are a person under age 65 with a disability, and have encountered problems with the two programs, please let us know about them, either by commenting in the box below or email to [email protected]

2.      If you have had experience with any of the programs discussed above, such as in Texas or North Carolina, please tell AAPD more about this by commenting in the box below or email to [email protected]

Affordable Care Act to Improve Data Collection, Reduce Health Disparities

via HHS (6.29.11):

Affordable Care Act to improve data collection, reduce health disparities

HHS Secretary Kathleen Sebelius today announced new draft standards for collecting and reporting data on race, ethnicity, sex, primary language and disability status, and announced the administration’s plans to begin collecting health data on lesbian, gay, bisexual and transgender (LGBT) populations. Both efforts aim to help researchers, policy makers, health providers and advocates to identify and address health disparities afflicting these communities.

“Health disparities have persistent and costly affects for minority communities, and the whole country,” Secretary Sebelius said.  “Today we are taking critical steps toward ensuring the collection of useful national data on minority groups, including for the first time, LGBT populations.  The data we will eventually collect in these efforts will serve as powerful tools and help us in our fight to end health disparities.”

>>>For the Full Press Release

Building Bridges Across Movements: Domestic Workers and the Disability Community Partnering to Improve Care

AAPD is partnering with the National Domestic Workers Alliance, Jobs with Justice, and Hand in Hand: The Domestic Employers Association for the Caring Across Generations campaign: an initiative centered on transforming long-term care in the United States for our loved ones who count on the support of caregivers to meet their basic daily needs, the workers who provide the care, and the families who struggle to access and afford care for their loved ones. 

On Tuesday, July 12^th, the campaign will be hosting a Care Congress, where seniors, people with disabilities, family caregivers, home care workers, domestic workers, children and families of care workers and people who need care will be sharing their care stories.  

We need as many people with disabilities to be part of this important dialogue!

What the Care Congress program will include:

• Sharing care stories: sharing testimonies and vision for change between seniors, people with disabilities, family caregivers, home care workers, domestic workers, children and families of care workers and people who need care
• Giving voice to change: engaging elected officials and key members of the Administration on the need for change
• Growing a movement at home: workshops and skill sharing to support participants to build the Caring Across Generations movement in their home communities.

The Caring Across Generations movement is centered on promoting honest, productive discussion among all those invested in improving care. If we are to meaningfully improve the care system for everyone, it is crucial that people with disabilities share their stories.

We need you at the table on July 12th!

RSVP to the first ever Care Congress today

Nothing about us, without us!