“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.

Building Financial Literacy and Building Acceptance

In April, we mark both Autism Acceptance Month and National Financial Literacy Month. Since we celebrate them together, let’s focus on how increasing financial literacy promotes acceptance and inclusion of people with autism and other intellectual and developmental disabilities (I/DD).

Economic self-sufficiency is one of the goals of the Americans with Disabilities Act (ADA), along with equality of opportunity, full participation, and independent living. As we approach the 25th anniversary of the ADA in July, we still have a long way to go to achieve the goal of economic self-sufficiency. Nearly one in three people with disabilities age 18 to 64 lives in poverty, more than twice the rate of working age people with no disability (DeNavas-Walt & Proctor, 2014). Correcting that financial disparity will require a lot of hard work on many fronts.

One step that we can take in our communities is to make training available to increase financial literacy of people with disabilities and their family members. As a part of its Real Economic Impact Network, the National Disability Institute has created the Financial Education Toolkit that includes an array of tools and resources to promote financial literacy education. These tools teach core concepts in areas such as understanding what money is, budgeting and spending responsibly, and establishing and working towards financial goals.

As we improve financial literacy, we also need to work with people with I/DD and their family members to put those concepts to work in a way that improves their individual financial situations. The Center for Future Planning provides critical information that people with I/DD and their families can use to stabilize their financial situations now and to plan for the future.  The Center provides families with resources on what public benefits are available and how to organize private funds in Special Needs Trusts and ABLE Accounts without putting public benefits at risk. ABLE accounts are not yet available, but we expect they will be soon in many states.

To participate in all aspects of community life, people with I/DD need financial resources. Even as April comes to an end, it’s important to continue developing ways to help people with I/DD and their families develop financial skills and build financial resources. Moving towards economic self-sufficiency is moving towards acceptance.

“Unreal” – My Trip To Washington for the President’s State of the Union Address

Senator Bob Casey and Sara Wolff

Senator Bob Casey and Sara Wolff

An interview with Sara Wolff, board member of National Down Syndrome Society, Board Member of The Arc of Pennsylvania, and her local chapter, The Arc Northeastern Pennsylvania as their Secretary.

Sara Wolff, 31, is a leading advocate for the Achieving a Better Life Experience (ABLE) Act for 8 years and continuing speaking and advocating for people with intellectual and developmental disabilities (I/DD), Down syndrome and other disabilities. Sara spoke to The Arc’s staff by phone on her way back home to Pennsylvania after attending the President’s State of the Union address as a guest of her U.S. Senator, Bob Casey. Members of Congress are given only one ticket for a guest at the annual speech before Congress. Sara and Senator Casey worked together on the ABLE Act, which President Obama signed into law in December of 2014.

What did you do before attending the speech?

I had dinner with Senator Casey and his wife, we had a great time. We also did some television interviews – it was awesome. We did four interviews together and we talked about the ABLE Act and many other issues.

What did you think about the speech?

I was very interested in many of President Obama’s points – I liked what he said about education and the middle class.

What did you think about being in the chamber?

Unreal. I felt like I was right there, with the President. Where I was seated he was right in the center. What an experience that I will never forget.

How was your seat?

It was crowded and I sat with a lot of people. I met a lot of people and I had a good time. I did have a good view of the President speaking.

What did you do after the speech?

I just hung out with my sister and Senator Casey’s staff. Went back to his office for a little while. It was a really cool night. I’m looking forward to getting home and doing more with the National Down Syndrome Society, The Arc of Northeastern Pennsylvania, and continuing to working at O’Malley & Langan Law Office in Scranton.

The Arc Marks Senate Passage of ABLE Act

Washington, DC – Today, as the U.S. Senate passed the Achieving a Better Life Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act has been approved by both the U.S. House of Representatives and now the U.S. Senate.  With the clock winding down on this session of Congress, now this important legislation can move to President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in both chambers of Congress.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future, depending on their own circumstances.  Our efforts will not be finished if President Obama signs this bill – The Arc will continue to work with the leadership and chief sponsors in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  We remain disappointed that certain pay-fors remain in the bill,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.  If the President signs the ABLE Act into law, The Arc will issue a fact sheet including the details on the bill as it has been revised through the legislative process.  Further details would come through the regulatory process.

The Arc Marks House Passage of ABLE Act

Washington, DC – Today, as the U.S. House of Representatives passed the Achieving a Better Life Experience Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act, H.R. 647, has been approved by the U.S. House of Representatives, and is one step closer to reaching President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in Congress.  The ABLE Act is a good example of how members of both political parties can work together to craft legislation that benefits people with disabilities, as disability knows no political, geographic, gender, or ethnic boundaries.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future.  The Arc will continue to work with the leadership and chief sponsors of this effort in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  Our goal is to ensure that people with disabilities get the full use of the ABLE Act.   We still have concerns about certain pay-fors in the bill, and hope that the House and Senate can resolve these issues,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.

The Arc Joins in Filing Supreme Court Amicus Brief on Affordable Care Act

WASHINGTON, D.C. – The Arc released the following statement upon joining other organizations in filing an amicus brief to the Supreme Court in advance of consideration of certain provisions of the Affordable Care Act. This particular effort focuses on the individual mandate to obtain health insurance, with the overarching goal of coverage for all Americans, including people with intellectual and developmental disabilities.

“Without a doubt, the Affordable Care Act is the most significant law for people with disabilities in over twenty years. The threats to the individual mandate to obtain health insurance are too dangerous for us to sit on the sidelines. Without an obligation to buy health insurance, our country won’t be able to make significant strides toward covering everyone, including people with pre-existing conditions. The individual mandate will reduce costs in the entire health care system. The Arc won’t waiver in our commitment to this law and the real changes and cost savings to our system that will undoubtedly benefit people with disabilities, their families, the workers that support them, and our entire nation,” said Peter V. Berns, CEO of The Arc.

The Arc Supports Members of Congress in Unveiling Legislation to Give Families Greater Financial Flexibility for Loved Ones with a Disability

Washington, DC – Today, The Arc of the United States joined Congressman Ander Crenshaw (R-FL), Senator Robert Casey (D-PA), Congresswoman Cathy McMorris Rodgers (R-WA), and  disability organizations to unveil the “Achieving a Better Life Experience Act of 2011” (ABLE Act) at the U.S. Capitol.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation. By creating ABLE accounts, this bill would let families plan and save secure funding for disability-related expenses on behalf of designated beneficiaries with disabilities that will supplement, but not replace, benefits provided through private insurances, the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  Instead of penalizing people with disabilities whose families are able to set aside some funds to allow them to be more independent in life down the road, the ABLE Act provides new opportunities and breaks down barriers for people with intellectual and developmental disabilities (I/DD).

“The ABLE Act is about giving people with intellectual and developmental disabilities the opportunity to achieve their dreams.  Families are looking for ways to finance things like an apartment, or a ride to work, or additional educational opportunities after high school that don’t jeopardize other necessary services provided by federal programs.  This bill creates a tool for families that could lead to a more independent and fulfilling life,” said Peter V. Berns, CEO of The Arc.

Berns spoke at a press conference on Capitol Hill and highlighted some of the important benefits for individuals with I/DD and their families. Members of the National Down Syndrome Society, Autism Speaks, and other organizations were also on hand to support the cause.

Berns referenced a young man named Geoffrey Mikol, who is a senior at Walt Whitman High School in Bethesda, Maryland.  After Geoffrey graduates, he would like to work in the community, perhaps in the paleontology field.  But in order to fulfill that dream, his mom will need to find ways to make it happen, saving additional dollars for training and transportation, and making sure she can financially plan and save for unforeseeable needs in Geoffrey’s future.

“Right now, there could be too many obstacles in Geoffrey’s way, forcing him to be unemployed and isolated.  The ABLE Act will remove barriers for people like Geoffrey, who shouldn’t have to abandon his dream of working in his community simply because of the logistics necessary to make it happen.  We allow this type of savings for the future of our children without disabilities – this just gives the same opportunity to people with disabilities,” said Berns.