Who Decides Essential Care?

The health care reform law provides categories of care that must be provided for customers of the health-insurance exchanges that are launching in 2014.  An article in today’s Wall Street Journal, “Defining Essential Care,” points out that “The next big issue for the federal health law as it moves toward implementation is how regulators will define so-called essential benefits—the basic medical services that health plans must cover under the law.”  So the details are left up to regulators who are now starting to develop the rules on what is an “essential” health care service and what is not.

Habilitative services, used by such children with Autism and other developmental disabilities, have become a particularly contentious point in the debate. The Arc’s Marty Ford provides an example of the difference between rehabilitative and habilitative services. (Visit our website to read Marty’s prior testimony on the importance of defining habilitation as an essential service.)

Spread Some Awareness in Your World

March is Developmental Disabilities Awareness Month thanks to a 1987 Presidential Proclamation which was the direct result of the advocacy efforts of The Arc.  A lot has changed since then: more people with intellectual and developmental disabilities (I/DD) are living and thriving in their communities rather than institutions, there are more opportunities in education and employment, more protections in health care, the legal system and other areas of human rights, there are more positive and accurate portrayals of people with I/DD in the arts, the list goes on. But we must remember that many of those advancements were hard won. Self-advocacy and advocacy on behalf of those with I/DD was the impetus for many of the positive changes in our society, such as the proclamation that recognized DD Awareness Month.

It’s up to you to continue to advocate for respect, access and inclusion of people with I/DD. Take advantage of March to spread some awareness in your world. Learn more about the issues concerning people with I/DD and The Arc’s position on those issues. Learn more about public policy that impacts people with I/DD and contact your legislator. Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. And, get involved. Find a local chapter of The Arc and volunteer or donate. Together we can continue to make a difference.

Home is in the Community

Most people with I/DD share the dream of living in the community in a home of their own.  For some, that dream may become a reality.

Earlier this week, Health and Human Services (HHS) Secretary Kathleen Sebelius announced that the federal government will dedicate billions of dollars to help individuals with disabilities access care in the community as opposed to institutions.

“There is more evidence than ever that people who need long-term care prefer to live in their own homes and communities whenever possible,” said Donald Berwick, administrator of the Centers for Medicare and Medicaid Services. “To restrict these individuals to institutions where even the simplest decisions of the day such as when to get up, what to eat and when to sleep are made by someone else must no longer be the norm.”

HHS is also proposing new rules to allow states to access additional federal Medicaid matching funds if they encourage individuals to live in a community setting, as opposed to a nursing home or other institutional setting.

Thirteen states are slated to receive about $45 million for demonstration grants this year, with $621 million budgeted through 2016.   Federal officials are awarding $621 million over the next five years to expand the Money Follows the Person to help people with disabilities who are living in institutions transition into the community with services and supports programs.

The new grants will have an impact on 13,000 people in Colorado, Florida, Idaho, Maine, Massachusetts, Minnesota, Mississippi, Nevada, New Mexico, Rhode Island, Tennessee, Vermont and West Virginia.

The Arc believes that adults with I/DD should have the opportunity to lead lives of their own choosing, reside in the community and to live independently with ready access to whatever services and supports they need to be included and participate as full members of the community.

Disability Policy Seminar: Speaking Truth to Power

Disability Policy Seminar 2011 Barbara Mikulski Wins Distinguished Leadership in Disability Policy Award

The Distinguished Leadership in Disability Policy Award was awarded to the Honorable Barbara Mikulski, pictured here with The Arc’s CEO Peter Berns and SABE’s Betty Williams.

The 2011 Disability Policy Seminar (DPS) – Cultivating New Champions on Capitol Hill – educated and empowered attendees to fight for our issues on Capitol Hill in mid-February.

Attendees were emboldened and inspired at the gathering, especially with the awarding of the Distinguished Leadership in Disability Policy Award to the Honorable Barbara Mikulski (D-MD), United States Senate. The award was presented to Sen. Mikulski by Betty Williams, President, Self Advocates Becoming Empowered.

Sen. Mikulski told a cheering audience of hundreds of advocates: “We all have to stand up together for the disability advocacy community adding that the Distinguished Leadership in Disability Policy Award is “a challenge for the future.”

Peter V. Berns, CEO of The Arc said “we are honoring Sen. Mikulski as a long-standing champion of disabilities issues and for her outstanding role in the passage of Rosa’s Law which is a great step forward in full inclusion.” Rosa’s Law is legislation that substitutes the term “intellectual disabilities” for the term “mental retardation” in many federal laws.

The stakes are high this year with disability programs facing serious budgetary and political challenges. This year’s record number of participants was spurred to action in this current climate and was briefed on the ‘hot’ issues facing people with disabilities, including the Affordable Care Act, Developmental Disabilities Act, Employment, Housing, Medicaid/Medicare and more.

Colleagues and friends gathered to honor and celebrate the career of Paul Marchand, who for 38 years has been one of the most ardent and successful disability policy advocates working on behalf of The Arc, United Cerebral Palsy and the entire intellectual and developmental disability community. The event kicked-off The Paul Marchand Internship Fund to support the next generation of difference-makers in the world of public policy and advocacy for the intellectual and developmental disability community.

The 2011 Disability Policy Seminar was presented by The Arc, United Cerebral Palsy the American Association on Intellectual and Developmental Disabilities, the Association of University Centers on Disabilities, the National Association of Councils on Developmental Disabilities and Self Advocates Becoming Empowered.

The Shock of Shaken-Baby Syndrome

A recent New York Times magazine article examined whether flawed diagnosis of baby’s with shaken-baby syndrome was causing innocent people to go to jail.

In 2008, a Wisconsin court wrote that there is “fierce disagreement” among medical professionals about the shaken-baby diagnosis. That same year the Ontario government reviewed 142 shaken-baby cases due to “the scientific uncertainty that has come to characterize that diagnosis.”

According to the Times article, “between 1,200 and 1,400 children in the United States sustain head injuries attributed to abuse each year. Most of them are less than a year old…there is no exact count of shaken-baby prosecutions, but law-enforcement authorities think that there are about 200 a year.”

At a trial for the caregiver sentenced to a 10 ½ year punishment for child abuse, in January 2010, parent Michael Whitmer took the stand in support of the decision. Four-month old Noah’s Whitmer’s caregiver was convicted for shaking the baby resulting in irreparable brain damage.

Whitmer told the jury: “This is a life sentence for my son, for my wife, for me and for our family.”

A parent’s perspective on caring for child with a developmental disability is profound, but it does not have to be a life sentence. The Arc provides supports and services to individuals and their families – to give them hope and opportunity over the course of their lifetime. Through embracing The Arc, families are provided with the resources they need to envision bright and fulfilling futures.

What Can I Do to Raise Awareness About Intellectual and Developmental Disabilities?

There’s a lot you as an individual can you do to raise awareness about intellectual and developmental disabilities (I/DD) in your community. And, since March is I/DD Awareness Month, that’s the perfect time to do your thing – we encourage you to pick at least one idea from the list below and make that your personal effort to raise I/DD awareness during March.

  • Post this as your status on Facebook at least once during March: March is Developmental Disabilities (I/DD) Awareness Month. Help me celebrate the contributions of all people with I/DD by copying and posting this as your status during March. Get more information about I/DD at www.thearc.org.
  • Tweet this out on Twitter at least once during March: March is Developmental Disabilities Awareness Month. Be aware. Visit www.thearc.org.
  • Write a post for your blog about someone you know with an intellectual or developmental disability and how they have inspired you.
  • Since many people with disabilities rely on publicly funded services to fully participate in their communities, policy makers need to know you are concerned about continuing those services in the face of budget cuts during tough economic times. Contact your legislator today and let them know you expect them to enact public policy to assist people with I/DD.
  • Contact your local chapter of The Arc to volunteer or donate. Local chapters are on the front lines of advocacy efforts and provide the services and supports essential to people with I/DD and their families. Often they are lifelines for struggling families and they need your help to accomplish their goals.
  • Watch movies and TV shows that positively portray actors with disabilities and discuss them with your friends and family. Two actresses with Down syndrome are featured on the hit TV show Glee and were recently awarded The Arc’s Inclusion and Image Award for their positive portrayals.
  • Talk to your employer about their practices for recruiting and hiring people with I/DD. Many employers don’t realize just how much an employee with I/DD can contribute to the workplace. Tell them.
  • Support businesses that employ people with I/DD and make sure they know you noticed.
  • Comment on The Arc’s Facebook page and Twitter profile about what you are doing to raise awareness of I/DD.

Temple Grandin to Keynote at Convention

Dr. Temple Grandin, the real-life inspiration the biopic which recently won Claire Danes an Emmy and a Golden Globe award, is scheduled to be the keynote speaker at The Arc’s National Convention in Denver, CO in September.

Dr. Grandin is a woman with autism who became one of the top scientists developing groundbreaking methods for the humane treatment of livestock. Make your plans now to attend the Convention this fall. Early registration begins soon at www.thearc.org.

 

Children Should Not be Budget Cuts, Minnesota Rallies to Keep Personal Care Assistance

The Arc of Minnesota Steve Larson image

The Arc of Minnesota’s Steve Larson.

Hundreds of advocates descended on the State Capitol in St. Paul Minnesota to protest a “cuts only” approach to balancing the state budget. Most at stake are ongoing cuts to the state’s personal care assistance (PCA) program. “We have got to really look at what the impact is, not only fiscally, but on human life.”

Pat Mellenthin, Executive Director of The Arc of Minnesota is on the frontlines and urged lawmakers to look beyond the hard numbers.

“The PCA provides in-home care for people with disabilities to live independently,” she said. “I think we’ve got to really look at how we can get better at serving people who have needs – not just cutting for the sake of cutting, which helps no one and oftentimes cost us more in the long run.”

Minnesota’s assessment for eligibility went into effect last year and since then, more than 4,800 individuals had their PCA hours reduced and even eliminated. Come July 2011, stricter eligibility requirements will commence and an additional 2,200 individuals – mostly children – will face the elimination of their PCA support.

For parents of children with special needs in Minnesota, the future is uncertain. Parent Betsy Davis adopted four special needs children and is in the process of adopting two others. Davis was confident and had been assured that her children would receive the services they needed, but last year, her two oldest sons’ PCA hours were cut by half.

Davis anticipates further cuts, saying “They’re taking money away from the most vulnerable children that we have to take care of, and that’s not the place to cut money; that’s not the place to make budgets balance. Children should not be budget cuts.”

Image courtesy of The Arc of Minnesota.

Transit Cuts in LA Hit People with I/DD

When The Arc Baton Rouge Executive Director Barry Meyer learned that the Baton Rouge Metro Council was considering a vote cutting services and raising prices, he was stunned. Meyer knew that cuts would severely impact people with intellectual and developmental disabilities.  Cuts to services and raised fares would hit those that relied on these services most.

The Capital Area Transit System (CATS) faces a $1.2 million budget shortfall.  After three decades of providing transportation to Baton Rouge, CATS said it has no choice but to cuts services and raise prices.

Advocates Make the Difference

Thanks to advocates like The Arc Baton Rouge and other citizens, CATS bus fares will not be increased and routes will not be eliminated in February.   While the service will continue for the short term, rejecting the money-saving measures means that the CATS bus system may shut down in October.

The Metro Council recently voted 7-5 in support of a motion to reject the service changes.  Meyer knew there would be hardship for those that rely on the bus, especially for employment, medical appointments and more.  When he first learned of the proposals, Meyer said, “I was thinking maybe as much as 20 percent, but the initial proposal was a 128 percent increase in current rates,” he said.

For those that depend on the CATS system, like Lynette Williams, a resident of Baton Rouge with cerebral palsy who uses a wheelchair, a change in fare and services would significantly change how she gets to work.

For Bobby Martin who works with Williams at Metro Enterprises in Baton Rouge, where he’s been employed for 38 years, says without CATS, he would lose his job.  Martin’s aide noted that, “Bobby’s parents are both in their 80’s and they can’t do his drive.”

Currently, a one-way ticket on CATS is $1.75 for individuals covered under the Americans with Disabilities Act.  Under the new proposal, the price would be $4 for the same ticket.

The Arc of Indiana Assails Budget Cuts

Indiana State Capitol Building imageWith 2011 barely a month old, advocates in Indiana reeled from incoming reports that Indiana’s budget crunch has become so severe that some state workers suggested to families that they leave their family members with disabilities at homeless shelters.

While the Indiana Bureau of Developmental Disabilities Services (BDDS) officially said this is not the agency’s policy, parents were told this was one option when families can no longer care for children at home and have not received Medicaid waivers that pay for services that support individuals living independently.

While news reports said that “there have been no confirmed cases of families dumping severely disabled people at homeless shelters because Indiana wouldn’t provide the care needed,” advocates received conflicting reports.  Kim Dodson, Associate Executive Director of The Arc of Indiana asserted that reports had been received of state workers in several BDDS’s eight regional offices steering families to take adults with disabilities to homeless shelters.

Funding at Risk Across the Country

From coast to coast, funding for basic services is at risk and thousands will continue to be hit hard.  Advocates know more budget cuts undermine the ability of an individual to make choices about where they live, work and enjoy the freedom to live independently.  As one disability advocate said, “the bottom line is that the more budget cuts we endure, the more our civil rights are reduced.”

Waiting lists for waivers in Indiana is 10 years and The Arc of Indiana has been vigilant in addressing the needs of thousands currently on the list.  In late 2010, The Arc of Indiana kicked off its next phase of the Pathways Campaign – a collaborative effort to redefine Indiana’s system of programs and services for people with developmental disabilities.

“With waiting lists now reaching over 20,000 people,” said John Dickerson, Executive Director of The Arc of Indiana, “the wait for too many families remains too long.”  In working for systems change through the Pathways Campaign, “we remain committed to advocating for and working with the state to move as many people as possible off waiting lists each month, and to providing Medicaid waivers to those facing emergency, crisis or an end to school aged residential programs.”

Recently, Dickerson was featured in PBS’ Need to Know addressing What Happens When Care Runs Out?  With thousands of people with intellectual and developmental disabilities sitting on waiting lists, this has reached a crisis point in communities across the country.

Image courtesy of Flickr user nicholascollins.