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.)

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.

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.


Make a Big Difference! Apply to be on one of The Arc’s National Committees

National Committees image

Do you want to make a big difference?

Then why not apply to be on one of The Arc’s national committees!

The Arc is seeking enthusiastic candidates to fill several roles. Community leaders, corporate executives and others willing to volunteer their time and service are encouraged to apply. We’re seeking individuals who are passionate about advocating for the betterment of the lives of children and adults with intellectual and developmental disabilities.

Committee positions are for 1 year terms and recruitment is open until February 10, 2011.

If you wish to be considered, please complete the online Committee Application.

You can learn more about what The Arc does here and read about our 60 years of advocacy for people with intellectual and developmental disabilities here.

How to Send Ron Barber Good Wishes

One of The Arc’s own was hurt in the tragic shooting that took place in Arizona Saturday. Thankfully, Ron Barber, U.S. Congresswoman Gabrielle Giffords’ district director and an advocate for The Arc of Tucson is recovering.

The Arc of Tuscon sent an email Monday to the local press, giving the public and disability community a way to send Ron good wishes and stay up to date on his condition:

Dear Arc Members and Friends:

As many of you know, our longtime friend and highly respected advocate for persons with disabilities, Ron Barber , was shot in Saturday’s tragic event. Many of you have asked for some information on his medical condition and now there is way for you to keep updated. And, best of all, you can send him your personal messages, which I encourage you to do.

Go to www.CaringBridge.org and register your name and email. There are no fees or hidden tricks with registering with CaringBridge. You will receive a return email confirming your email address, and then you can go to the site anytime and click on “Visit”. A box comes up and you will type in ronbarber – this will take you to his personal page where you can read about him and post personal messages.

All of us at The Arc of Tucson are keeping Ron and his family, as well as Gabrielle Giffords and others involved, in our prayers and I encourage you all to do the same.

More State Budget Cuts Mean Fewer Civil Rights for People with I/DD

Scissors imageNYSARC’s latest “News & Alerts/Legislative Advocacy Network” spotlights services to people with I/DD being cut by state governments across the nation to balance budgets and stem acute fiscal crises.

Budget cuts would be devastating to service providers and to those who receive services, like Maryland resident Ken Capone, who has cerebral palsy. Capone, a self-advocate and public policy coordinator for People on the Go said, “I just got approved for in-home services. I live with my mother. She’s in her 70s and is still my primary caregiver. I don’t want to lose the services that I just received because of the cuts. It’s scary what would happen if I did lose my services.”

From coast to coast – from Washington to Massachusetts – funding for basic services is at risk and thousands will be hit hard. The Maryland Secretary of the State’s Department of Health and Mental Hygiene says “we’re beyond the point where painless cuts can be made.”

Recently we shared advocacy efforts by The Arc of Texas on behalf of more than 4,500 people with I/DD in Texas “trapped” in nursing homes providing inadequate care. The Arc and the Coalition of Texans with Disabilities joined to file a class-action lawsuit against Texas along with six individuals with I/DD.

The Arc knows that most people receive better care in a community-based facility or in their own homes and in this instance, “Many are denied the opportunity to live where they choose.” said Mike Bright, executive director of The Arc of Texas.

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 in Boston said, “the bottom line is that the more budget cuts we endure, the more our civil rights are reduced.”

Image by Brokenarts.

The Arc and the Autism Society Team on the Autism NOW Center

Autism NOW Logo imageThe Arc and the Autism Society are joining forces on Autism NOW: The National Autism Information and Resource Center – a new and dynamic National Initiative of The Arc funded by the Administration on Developmental Disabilities.

The partnership includes participation on the National Advisory Committee and providing information and referral services through the Autism Society’s AutismSourceTM national contact center. The Autism Society’s chapter network will also be tapped to share information with the broader autism community about the Autism NOW Center’s activities and resources.

The Autism Society has provided information and referral services to the community through AutismSource since 1971. Families can access AutismSource at www.autismsource.org, submit an inquiry through www.autism-society.org/asa_contact or by phone at 1-800-3Autism.

In October, The Arc received an award of $1.87 million for fiscal year 2010 to establish a national resource and information center on Autism Spectrum Disorder (ASD) and other developmental disabilities. To learn about the Center visit http://www.autismnow.org.

Morgan Stanley Smith Barney Recommends The Arc

Morgan Stanley Smith Barney recommended The Arc along with just 19 other national nonprofits to individual investor clients through their Holiday Gift Catalog. That means that high net worth investors (we’re talking millionaires and billionaires) received a beautifully-produced catalog this holiday season containing MSSB’s list of the top twenty organizations deserving of their support. The list is eclectic to say the least, including Doctors Without Borders, The Julliard School and the National Disaster Search Dog Foundation. But, as Douglas Ketterer, MSSB’s Head of U.S. Private Wealth Management says in his introduction to the catalog, “This publication contains a wide assortment of unique gifts and exceptional funding opportunities offered by 20 highly vetted nonprofit organizations.” He goes on to state that each organization was chosen based on an application in which they were asked to illustrate how they fulfill a crucial need that would otherwise go unmet in the community.

We take inclusion in this catalog as a very high compliment – and as a supporter of The Arc, so should you. Members of the intellectual and developmental disability community are all too aware of the crucial needs The Arc meets for individuals with I/DD and their families every day. This wider recognition in MSSBs catalog and promotion to their wealthy and powerful clients can do nothing but help further our mission.

We crafted three unique “gifts” to help those investors connect with The Arc. The catalog recipients will find a special donation page through at button on our home page reflecting our listing in the catalog. All of these gifts relate to direct service programs offered by our chapters, and dollars received from these gifts will be re-granted to chapters. Happy holidays, everyone!