White House Conference on Aging: A Critical Moment for Individuals with I/DD and Aging Americans

The White House Conference on Aging will be held on July 13, 2015, during a momentous year in which we mark the 80th anniversary of Social Security as well as the 50th anniversary of Medicare, Medicaid, and the Older Americans Act. The conference provides an opportunity to discuss these critical programs and find ways to strengthen them to continue to serve older Americans in the next decade.

These programs not only serve older Americans, but they also serve people with intellectual and developmental disabilities (I/DD). At The Arc, we are committed to advocating for people with I/DD and their families. This means ensuring that individuals with I/DD have services in place throughout their lifespan and that aging caregivers of people with I/DD have the support they need.

We spoke to advocates and caregivers to ask them what issues need to be addressed at the White House Conference on Aging. Here are their questions:

Carla Behnfeldt: I am 55 years old and live in Pennsylvania. My parents, who are in their 80s, and my 57 year old brother who has intellectual and developmental disabilities, all reside in upstate New York. My parents worked hard to find a good group home for him near their home and to get him Medicaid long term services and supports. Due to their age, my parents are in need of more and more support from me, and I would like for us all to live close together. I looked into having my brother move to Pennsylvania. I was shocked to learn that he might have to wait years to receive Medicaid services in Pennsylvania. And, there is no guarantee that Pennsylvania would provide him the services that New York does. My parents won’t move if my brother can’t move. The fact that my brother’s services can’t be transferred between states makes it very difficult for me to become my brother’s primary supporter and to provide my parents with the care they deserve as they age. What are your proposals to make Medicaid benefits portable between states?

Margaret-Lee Thompson

Margaret-Lee Thompson

Margaret-Lee Thompson

I am 70 years old.  For 21 years, I worked as a parent coordinator at The Arc of King County in Washington State. Our son Dan, who had Down syndrome, died when he was 36.  Many of the parents I worked with are in their 70s, and their children with intellectual and developmental disabilities are still living at home with them.   Their sons and daughters are middle-aged now, and when the family tries to get the government support that would enable the son or daughter to move into a new living arrangement, the families are told that they need to go on a waiting list.  These lists are often a decade or more long. The Community First Choice Option created by the Affordable Care Act, with its additional federal matching funds in 2014-15 will allow our state to be able to have the funding to move 1000 individuals onto our Basic Plus Medicaid Waiver.  But there are still 10,000 individuals and families in our state who have NO PAID SERVICES. The senior families have waited the longest. Many have simply given up asking for help. This is just wrong. It is not uncommon for the individual to lose their last parent, be moved from their home and be moved in with people they have never met – all on the same day. The parents should be able to support their sons and daughters while they transition to a new home. What are you doing to change things so these parents can live out their senior years with a sense of peace and comfort in the knowledge that their sons and daughters will live a good life after they are gone?

Pia Muro

Pia Muro

Pia Muro

I am 70 years old and live in Tustin, California. My younger daughter, Crystal, is 29 and has Down syndrome. She works at a senior center and lives at home with me. We’ve started the planning process as a family to make sure she continues to live a happy and independent life when I’m no longer able to provide support.

English is my second language and the planning process can be difficult to understand. What is being done to make sure that people from different backgrounds can get support from people who speak our language and understand where we are coming from?

Carrie Hobbs Guiden, Executive Director, The Arc of Tennessee

Carrie Hobbs-Guiden

Carrie Hobbs Guiden

There are nearly a million families in the United States in which adults with intellectual and developmental disabilities are living at home with an aging caregiver. Most do not have a plan in place for what is going to happen when these caregivers are no longer able to provide support.   There are many barriers to planning – including fear – but it is important that families make a plan for the future. They should gather information about the family’s history and wishes, and they should explore housing, employment and daily activities, decision making supports, and social connections.   What are your proposals to help these families to plan for the long term needs of their adult children with disabilities?

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at futureplanning.thearc.org for more information.

“You’re in this for the long haul” – A Lifelong Advocate’s Ask of Families To Speak Up

Graduation picture

Kandi, Ginger, Austin, and Don

Ginger Pottenger has been a member of The Arc – at either the local, state, or national level – since the early 1970s. She lives in Arizona, near her daughters, Kandi and Kristi.

How did you get involved in the disability advocacy movement?

I was an advocate before I knew it what that really meant. My daughter Kandi, who will soon turn 51, was diagnosed with “mental retardation”, as it was known then, when she was 3. The diagnosing doctor’s advice was to take her home and love her. And that’s what we did. We stumbled into inclusion. We were lucky to be in a community and at a pre-school that saw the value in her being included with kids without disabilities. When Kandi started grade school, someone asked me if we were involved in The Arc. So I went to my first meeting at my local chapter, and before long, I was serving on their board.

As a parent, what were some of the early struggles and triumphs you encountered?

I didn’t fully appreciate it then, but Kandi’s inclusion in pre-school was a triumph at that point in time. This was still the era of putting kids in institutions. But we had our ups and downs – I had to push hard to have Kandi walk at high school graduation. Then as a young adult, living a few towns away and working in the community, we had some serious issues with the staff.

You have been both a “professional advocate”, serving as an executive director of chapters of The Arc and on boards and other positions, and a parent to Kandi. How have those experiences shaped how you advocate?

I have seen the power of the personal, nitty gritty story, on public policy. People are too scared to get on the phone or get in front of their elected officials, and tell them the consequences of their policy decisions. Or people will think they don’t have time to advocate. And I understand raising a family, including a child with special needs, maintaining a career, a marriage, a life – it all takes time. But you’re in it for the long haul as a parent. Share your hopes and dreams for your family, the struggles, your fears.

What’s your biggest concern today for the future of Kandi and other people with I/DD?

What is going on at the federal level with funding and the structure of Medicaid scares me to death. And it should scare others into action. The threat to our funding is real and if we lose the supports that Kandi has, our options are bleak. Chapters of The Arc should be the place they go for training on how to advocate, for encouragement from chapter leaders and other families.

How do you suggest presenting your story?

I don’t sugarcoat it – I just met with my state senator recently, and I told her – I can’t die not knowing that the supports will be in place for Kandi. I’ve worked too hard for it to all go away when I’m not here. Right now, she’s in a good place, living in a townhome, with some supports, and has supported employment in the community. But what does the future hold for her if public policy decisions change the way the money flows?

I’ve been doing this for many years, and I still write out what I want to say, and I practice. I may only get 10 minutes with that important person, and I’m going to make an impact. I tell them about our lives and why these supports are so important. I want them to understand and remember that our lives are impacted by their policy decisions.

What else do you think makes an impact?

I’ve also dug into the dollar and cents of what Kandi receives, to demonstrate that the investment is going a long way to her independence. I contacted our Division of Developmental Disabilities office in Arizona to get the dollars for Kandi’s supports. I had them break it down between federal and state dollars and type of support. Kandi has support in her house and supported employment supports at work. I then took those numbers down to what the state and feds pay a day so Kandi can have a real life in the community. I compared the cost to more restrictive settings and it is so much less money!

What do you do to develop a relationship with your elected officials?

It begins by visiting with them. I take notes about my interactions with public officials. Thank them for what they’ve done right. The disability community is thrilled with the passage of the ABLE Act. And it was the most bipartisan thing Washington has done in a long time! You have allies where you least expect it.

Any final thoughts to share?

Families can’t wait for the crisis to think about the future. It blows my mind how many people with disabilities the same age range as Kandi, whose families haven’t considered what’s going to happen when they die. The Arc’s Center on Future Planning is going to be a great resource to them, and so will their local and state chapters of The Arc. These families need to face reality – so much has changed for people with I/DD in society. We can’t go backwards, and they’ve got to step up.

Supporting The Age Wave: Baby Boomers and Autism

Since 2010, baby boomers in the United States have been turning 65 at the rate of approximately 10,000 a day. Some of these new baby boomers are people with autism. At the same time, over 3.5 million adults with autism and other developmental disabilities are living with family members. In nearly 25 percent of these households, the family caregivers are over 60 years of age. During Autism Acceptance month, we should address the challenges that the age wave creates for people with autism and their family members.

To start, people with autism over the age of 65 should learn about benefits that may be available to them in the disability and aging service systems. Learn about what public benefits the person with autism may be eligible for and apply for the appropriate benefits. In addition, Area Agencies on Aging (AAA) can help you access services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit www.ncoa.org for more information about additional benefits available to seniors.

Supporting aging parents of people with autism is another critical issue that needs to be addressed. In addition to the health and financial issues that all seniors face, caregivers are often overwhelmed by concern about what the future will look like for their son or daughter once they can no longer provide support. Although planning for the future can be challenging and emotional, it is necessary and possible.

Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by adults with autism, their caregivers, and other family members. The Arc’s Center for Future Planning offers information and resources to adults with I/DD, aging caregivers, and other family members.

During Autism Acceptance Month, here are some ways you can access more help:

 

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at futureplanning.thearc.org for more information.

The Arc to Launch New National Resource Center for Future Planning

The Arc is pleased to announce it has been awarded $800,000 over two years by the May and Stanley Smith Charitable Trust to develop a National Center on Future Planning for families and individuals with intellectual and developmental disabilities (I/DD).

The goal of this project is to support the estimated 600,000-700,000 families in the United States where an adult with I/DD is living with aging family members and there is no plan for the individual’s future.  The Center will empower aging caregivers to plan for the future of their adult son or daughter with I/DD, providing families with information, resources, and practical assistance in person-centered planning; guardianship and supported decision-making; housing and residential options and supports; special needs trust and representative payee services; financial planning; and personal care and independent living supports.

“There is a silent crisis facing our country that desperately needs a solution – what happens when there is no plan for how an individual with an intellectual or developmental disability will live life to the fullest when the loved one they live with is no longer with them?  In the last twenty years, people with disabilities have made great strides to live independently, be a part of their community, and experience all they want in life.  But too many people are facing the next chapter in their lives without a plan, and The Arc is seeking to provide help to families and people with disabilities looking for that roadmap,” said Peter Berns, CEO of The Arc.

The Arc’s new Center for Future Planning will have a robust online presence, with an interactive and user-friendly website geared toward older learners, with extensive, vetted content.  The website will include a database of sources for local-and state-based information, people, and related organizations, and a searchable provider database.  The Arc will also operate a telephone and online information and referral system, connecting people to help in their communities.

Chapters of The Arc will play a critical role in this Center, as they will be able to access best practice protocols when providing future planning resources in their local communities.  The Center will also feature a National Pooled Special Needs Trust, develop protocols and business infrastructure to provide private trust companies with outsource assistance in servicing existing and future beneficiaries under individual special needs trusts, create training and networking opportunities for families and professionals in the field, and establish a volunteer action network.  This new network will pair self-advocates with volunteers without disabilities to visit people with I/DD in community settings and monitor their satisfaction and quality of life.

“This ambitious project aims to support people with intellectual and developmental disabilities and their families as they face a big transition in their lives.  Families and people with disabilities are seeking out these resources, and just as The Arc has done for last sixty years of this movement, we are innovating to be a leading resource into the future,” said Berns.