Solutions for Elderly People with I/DD – Call for Innovative and Effective Solutions

Most of us have heard of the aging baby boomers, and have seen the rising population curve that shows how many of us will turn 65 and older over the next few decades.  The word on the street is that 10,000 Americans will turn 65 every day.  The image raises questions about security in the older years, caregiving for loved ones that are elderly, health care, employment, housing, transportation, acquired disability due to aging, the limited direct care workforce available to provide quality care, and the risks associated with each of these issues down the line.  For The Arc and those we represent, the aging issue brings about another unique dimension:  aging people with intellectual and developmental disabilities.

Recently I drove through the heartland of America on a few less-traveled roads.  Small towns drifted past my view.  In those towns lived a community of people of all ages, some of them I’m guessing were older, even elderly.  Statistics insist that people with I/DD represent up to 4% of the total US population.  So I do the math, and figure that even small towns have the likelihood of having someone in their community with I/DD of any age.

People with I/DD are also part of the baby boom scenario, in that they, too are growing older.  This group of older individuals with I/DD is virtually invisible to the general population.  Many have lived with their even older parents, often tucked away from the larger society.  Research shows that many people with I/DD have significant health disparities – obesity, diabetes, heart disease, asthma, and dementia to name a few- some of which unfortunately result in an unnecessarily shorter life span.  The Centers for Disease Control is attending to this issue as a priority, as is The Arc with its new CDC-funded HealthMeet initiative to promote health for people with I/DD.

This leads me to some questions: what do people with I/DD do when their own elderly parents leave the home for assisted care, or die?  What happens to the person with I/DD if families don’t have a future transition plan in place?  What if they don’t have other family members or a local service provider willing to take over support responsibilities? How is the response system prepared to address a traumatic transition during an emotionally traumatic time, and in a way that accommodates and supports the person with I/DD?   How is the medical profession prepared to address age-related disabilities in the context of someone with I/DD?  How is The Arc working with families and communities to respond to these unique issues?

Knowing that the Chapters of The Arc are the foundation of innovative and effective solutions, I invite you to send me a description of what your Chapter is doing in aging services for people with I/DD.  Send me stories of how your program has changed the life of someone that is older for the better, or if you are a family member of or an older person that identifies as having an intellectual or developmental disability that has experienced a positive outcome from a local Chapter, send me your story.  You can write me at research@thearc.org.

I look forward to hearing from you.

The Arc’s HealthMeet™: Health Promotion for People with Intellectual Disabilities

You may have heard the good news in August that the Centers for Disease Control (CDC) awarded The Arc a three-year cooperative agreement to raise awareness of and reduce the significant health disparities often experienced by people with intellectual disabilities, including those with autism. We aim to do this through offering free health screening events for people with ID, collecting and evaluating the health screening data, and launching an amazing array of evidenced-based and best practices training for key stakeholders, including people with ID.

The Arc has one million dollars to work with in this first year of the project.  And one year to make an incredible impact.

Imagine someone with an intellectual disability going through a health screening to discover that they have an undetected health issue, like high blood pressure, an infected tooth, or an untreated issue on the bottom of their foot.  Or maybe it’s a hearing problem or blurry vision that shows up in the screening.  Health professional volunteers conducting these screenings will help identify areas of concern, and staff from Chapters of The Arc will be on site to provide information, referrals, and linkages to local doctors.  This effort will be among the first to collect HIPAA-compliant health data on this population, data that will help bring more awareness and solutions to health issues that they face.

So what is our plan?  Our goal: to move more than 6,000 people with ID of all ages through a basic, free, non-invasive health screening that is conducted by volunteer health professionals such as nurses or medical students.  The CDC helped The Arc to shape the plan that focuses on five selected states/regions in which to work on implementing HealthMeet™ initiatives in this first year.  Working in a pilot phase with an eye towards replication opportunities, The Arc will be working with The Arc of Massachusetts, The Arc San Francisco, The Arc New Jersey, ACHIEVA in Pittsburgh, PA, and The Arc of North Carolina.  Together, we will implement and evaluate five different models and the work has already begun.

We are working with some amazing national partners – the Association of University Centers on Disabilities (AUCD), the American Association on Intellectual and Developmental Disabilities (AAIDD), Autism Speaks, the National Down Syndrome Congress, and the National Association of County and City Health Professionals.  Therap LLC is helping us to collect the data using state of the art technology, and the Elizabeth Boggs Center in New Jersey is helping with the data evaluation.  We are in discussions with major corporations to see how they can lend a helping hand to this important initiative.  The Arc’s own National Self Advocacy Council is involved in getting their growing network of people with intellectual disabilities involved.

We’re going to need your help.  As these Chapters of The Arc work within their states to implement HealthMeets™ early in 2013, we want our network and our national partners to activate a HealthMeet™ movement in these states.  There’s going to be online training that you can register for, learn from, and pass along to someone else.  There might be someone you can help by getting involved yourself as a volunteer.

You’ll be hearing more and more about HealthMeet™ as we advance towards full implementation.  We can all take part in activities that lead to being healthy.  Join us!

HealthMeet™ is funded by the Centers for Disease Control Grant # 1U59DD000993-01.  For more information, please contact The Arc of the United States at 202-534-3700 or at info@thearc.org.  Or, visit our website at www.thearc.org for project information.

The Federal Government Needs Your Input on I/DD and Alzheimer’s Disease

The Administration on Intellectual and Developmental Disabilities (AIDD) is seeking input from family members and caregivers of people with intellectual and developmental disabilities (I/DD) who also have Alzheimer’s disease or other forms of dementia.  AIDD wants to learn more about addressing the needs of specific populations disproportionally affected by Alzheimer’s disease, like people with Down syndrome.

If you are a family member of a person with I/DD who also has Alzheimer’s or dementia, AIDD is specifically looking for your experience with the following topics:

  • Accurate and timely diagnosis;
  • Access to care;
  • Education on Alzheimer’s disease for practitioners who do not normally specialize in care for people with Alzheimer’s disease; and
  • Special considerations for these populations.

Responses should go directly to Dr. Mette Pedersen at mette.pedersen@acf.hhs.gov  and  Matthew Janicki at the University of Illinois at Chicago, mjanicki@uic.edu by September 25, 2012.

We at The Arc appreciate your willingness to share your thoughts with AIDD – the more they hear from people directly involved with the care of people with Alzheimer’s and I/DD, the better chance we have at making progress in addressing the needs of people with I/DD.

Disability Advocates Ready to Hear From Candidates at National Forum

2012 National Forum on Disability IssuesThe National Forum on Disability Issues is just a few weeks away, but neither presidential candidate has made an official commitment to attend. The disability community is taking note.  A lot is at stake in the election for this population, which accounts for one in five American citizens.

The National Forum will be an historic event and the only opportunity during the campaign that President Obama and Governor Romney will have to showcase their views on the myriad of issues facing people with disabilities. Scheduled to take place in Columbus, Ohio on September 28, the Forum will be attended by 500 individuals with disabilities, their families and advocates.  The event will be nationally webcast at watch parties all over the nation.

The forum is not a debate, but rather a venue in which the candidates can share their visions for a positive and meaningful future for individuals with disabilities. Ohio Senatorial candidates Sherrod Brown and Josh Mandel have also been invited to attend to express their views.

The Arc has joined more than 50 other national organizations in pledging our support as a co-sponsor of this event.

“People with disabilities are disproportionately impacted by the major campaign issues in this election,” said George Jesien, Executive Director of the Association of University Centers on Disabilities, one of the event’s sponsors. “The fiscal uncertainty of our nation, proposals to reform entitlement programs, the battle over health care reform and perpetually dismal job opportunities for people with disabilities – these are major concerns for our community and we hope to have meaningful participation from both campaigns to address them.”

For the more than 57 million Americans  with disabilities, including people who are acquiring disabilities as they age and the growing number of veterans with disabilities, the Forum is the one place they can hear the candidates’ views on issues such as health care, long-term services and supports, education and employment. A Forum was held during the 2008 presidential elections, and both the Obama and McCain campaigns participated.

The issues facing Americans with disabilities and their families are universal and non-partisan. More than 50 diverse aging and disability organizations have come together to host the Forum, with more sponsors joining every day.

The disability community is counting on the presidential candidates to speak up for disability issues and make their voices heard on the nation’s only platform dedicated to this topic. For more information on the Forum and how to invite the candidates, visit www.nfdi.org or The Arc’s Action Center.

Standing up for Voting Rights

By Steve Larson, Senior Policy Director, The Arc Minnesota

The voting rights of persons with disabilities are in jeopardy across the nation.  Laws and constitutional amendments to restrict the access of people to the polls have been passed in numerous states already.  Here in Minnesota, voters will decide in the November elections whether to require all voters to have a photo ID and to change other Election Day procedures that will create unnecessary barriers to voting.

In Minnesota, challenges to voting rights have also surfaced in the courts.  Fortunately, disability advocates saw a victory in an August 17 ruling by the U.S. Federal Court in St. Paul.  U.S. District Court Judge Donovan Frank dismissed a lawsuit filed by several state legislators, individuals, and organizations who have worked to restrict voting rights.  The lawsuit asked the court to limit the right to vote of people under guardianship, including people with disabilities.  If the lawsuit were upheld, it would have run counter to current Minnesota law, which presumes that people with disabilities retain their right to vote, unless a court specifically takes that right away.

The Minnesota Disability Law Center, the federal protection and advocacy agency in this state, filed an amicus (“friend of the court”) brief to the judge hearing the case. It cited the legal and legislative basis for the presumption that people with disabilities under guardianship have the right to vote. The Arc Minnesota signed on to this brief, which the judge said provided a “comprehensive overview and history of Minnesota guardianship law.”

The plaintiffs who filed this lawsuit will appeal the judge’s ruling.  In the meantime, The Arc Minnesota and other disability advocates are celebrating this victory in the courts.  Our efforts will continue to protect the rights of people with disabilities to have a voice in whom their elected officials are.  These will include statewide efforts to defeat the voter restriction amendment on this fall’s ballot, and educating the public and the media about the right of people with disabilities to have a say in issues that touch their daily lives.  Let’s all fight efforts like these that push people with disabilities back into the shadows of society.

For People with I/DD, Absentee Ballots May Be the Way to Go

We've Got the Power – Vote in 2012The 2012 national elections are fast approaching and it is vital that people with intellectual and developmental disabilities and those who care about them get involved in the political process to help protect their interests. Whether it is a local, state or national election, advocates for people with I/DD have a responsibility to educate candidates about the issues and vote for those candidates who support the legislation which allows people with I/DD to live and be included in their communities with the appropriate supports.

One of the easiest ways to get involved in the political process is by simply voting. For people with I/DD, this can sometimes be a challenge. Even for people without disabilities, there are many reasons why they feel like they just can’t make it to the polls on Election Day. Have you heard (or used) any of these reasons for not voting?

  • I have medical problems or conditions that make it hard to leave the house or wait in line at the polls (and the lines will be too long!)
  • I don’t drive and I don’t have anyone who can take me there and back or the bus or subway routes don’t go near my polling place
  • I have to work that day, I have an appointment that day, I have to stay home with my child/loved one that day.
  • The voting booths can be intimidating/ I’m worried I won’t know how to use the machine and the poll workers might not understand my disability and be willing to help me figure it out.
  • I’m afraid the poll workers won’t let me vote – maybe they won’t understand me if I have difficulty speaking or maybe they’ll say I’m not qualified.

Those are all common and understandable reasons that cause people to give up their constitutional right to vote. Luckily, there may be a simple answer to every single reason on this list (and just about any others you can think of). Absentee ballots! Absentee ballots can allow people to vote using a mailed ballot with which they can take  time to read and re-read and think about their choices if necessary, get assistance with filling out the forms from caregivers or family members and not have to worry about getting to the polls on election day. Each state is somewhat different in their absentee voting processes and procedures so contact your local board of elections to find out more and get your absentee ballot. Make Your Mark this Election Day!

The Affordable Care Act: What Disability Advocates Need to Know

The Affordable Care Act: What Disability Advocates Need to KnowNow that the U.S. Supreme Court has affirmed the constitutionality of the Affordable Care Act (ACA), the disability community must work to better understand the law and the many benefits it can provide to people with disabilities. This will be critical to the community’s role in helping to move states forward with implementation.

Numerous ACA provisions related to both acute care and long term services and supports hold great promise for improving the health and wellbeing of people with disabilities. The Arc’s national public policy team has put together this analysis to provide information about the major provisions and the status of their implementation.

This analysis was previously shared with those who are signed up for our Action List. Want to get involved with The Arc’s legislative advocacy? Sign up here.

If you require a Word version of this document, please contact Kristen McKiernan, McKiernan@thearc.org.

Turbulence for People with Disabilities – What The Arc is Doing to Make Air Travel More Accessible to People with Disabilities

Cameron and Nancy

Cameron is on the autism spectrum and was completely non-verbal until a Wings for Autism event at Logan Airport where he said “airplane” while sitting on the plane. That was the first word that he had ever spoken at 5 years old. His mother Nancy reassured him with “yes Cameron, you are on an airplane.” Nancy says: “It is a moment I will never forget and I will always be grateful to the Wings for Autism program for that.”

Recent headlines about people with disabilities facing difficulties while traveling are troubling – just this week, the Vanderhorst family from Bakersfield, CA was not allowed to board an American Airlines flight home from visiting family on the East Coast, after they claim a pilot discriminated against their son Bede, who has Down syndrome. Stories like this one demonstrate the need for the airline industry to work with families to learn what to expect when people with intellectual and developmental disabilities (I/DD) travel.

One chapter of The Arc, The Charles River Center in Massachusetts, is leading the way in this type of education.  Working with Massachusetts Port Authority, JetBlue, and the Transportation Security Administration (TSA), The Charles River Center has created a new program called Wings for Autism.

Parents of children on the autism spectrum have a lot to take into consideration before making travel arrangements, from how their loved one will respond to the lights at the airport, their comfort level with airport security talking to or touching them, and how the noise on the plane will affect their child.

Wings for Autism sets up simulations of airport travel and security at airports across the country, giving families and airport and airline personnel an opportunity to do a test run for air travel.

At a recent simulation at Logan Airport in Boston, volunteers from JetBlue including flight attendants and pilots, staff from United Airlines, TSA officials, and ticket counter agents practiced the routine of air travel to prepare parents and children for what to expect when traveling.  The simulation required families to clear security, board the plane, fasten their seatbelts, and prepare for take-off.   For children who had issues with the various steps of the simulation, behavioral specialists were on hand to help parents and children work through the exercise.

While the program’s primary goal is to help children and parents, there is also an orientation process for TSA and airline staff.  This is the kind of education that appears to be desperately needed across airlines.  And The Arc is looking to expand this program, so that more families and airline and airport personnel can make flying a little smoother.

Good News! Early Registration Deadline Extended

National Convention and International Forum, The Arc, Inclusion International: Achieving Inclusion

Now you have more time to register and save up to $100 off the regular registration rate.

You don’t want to miss the incredible slate of informative sessions and enlightening speakers we have on tap for you in Washington, D.C. October 25-28. Plus, we’re partnering with Inclusion Internationals to bring a global perspective to the question of what it really means to live and be included in the community for people with intellectual and developmental disabilities.

Here are just some of the highlights:

  • Kathy Davis, a board member from The Arc’s chapter Noble of Indiana who helped develop The Arc of Indiana’s “Blueprint for Change” to improve service delivery in Indiana at our leadership pre-conference.
  • Social Security Commissioner Michael Astrue receiving our President’s Award for his commitment to people with disabilities.
  • Plenaries covering living and being included in the community, advocacy and policy working together for change and the key issues of choice, support and inclusion.
  • A variety of sessions on topics such as aging and disability, transitioning from school to work, assistive technology and political participation.
  • The Marketplace featuring Entrepreneur’s Alley which spotlights microbusinesses run by people with intellectual and developmental disabilities.

Even if you can’t attend the entire conference, one-day and special event tickets are available at lower rates, so register now. Enjoy everything our nation’s capital has to offer, beautiful fall weather and the opportunity to learn and share with the global I/DD community. We’ll see you there!

Promoting Inclusion in All Situations

By Mary Funk, Deputy Executive Director of The Arc of Prince George’s County.

Save the ChildrenWhat do chapters of The Arc do? A better question would be – what don’t they do? Supporting individuals with I/DD and their families can mean a number of things, from providing services to hosting educational program. Chapters look at the overall needs of the families they serve and are constantly working to find new ways to address needs in their communities. Realizing that many child care facilities are not required to specifically account for infants, toddlers or children with disabilities or those with access and functional needs in their disaster preparedness plans our chapter decided to take action.

Five years ago, The Arc Prince George’s County received a grant from the Maryland State Department of Education to create an inclusive childcare center. We forged a partnership with the local YMCA that was already providing childcare for typical infants andchildren 6 weeks – five years.  The Y offers the facility and childcare license, and our chapter provides the nurse and years of experience working with children with disabilities.

The collaboration has enabled children with developmental delays, physical disabilities, and medical diagnoses to play and learn alongside their typical peers, regardless of the nursing needs that may be required. Children are not separated because of their disabilities by walls or classrooms in any way. They receive on-site physical, occupational, and speech/language therapies and any needed specialized care. Children without disabilities play alongside children with disabilities, never concerned with any “differences”. They do not see a child with a disability….they see only a friend.

We are so pleased to share that Save the Children’s fifth annual “National Report Card on Protecting Children During Disasters” highlights the success of one of our employees, Judy Tribby, who works at the YMCA inclusive child care center, in Bowie, MD.  Judy has been instrumental in ensuring that emergency plans in place at the center take into account every need of the children with disabilities.  Her work paid off in August 2011, during the East Coast earthquake.

To learn more about Judy’s work and to read the full report, visit www.savethechildren.org/disaster-report.