#HandsOff: Jake’s Story

###This is the first installment of a new series at The Arc Blog called #HandsOff. Each month, we will feature a story from individuals and families across The Arc’s network about their experiences with some of today’s key policy issues impacting people with disabilities. ###

Jake and Melinda

The author, Melinda, and her brother-in-law, Jake

My name is Melinda and I live in Monroe, North Carolina. I am terrified that the tax plan that Congress is pushing through will lead to cuts for critical programs that people with disabilities rely on. My brother-in-law, Jake, is 36-years-old and my reason for speaking out.

In 2005, my husband and I invited his 24-year-old brother, Jake, from Alabama to live with us in North Carolina in our home. Jake has an intellectual disability as well as some additional mental health issues. While he has significant challenges in daily living as well as academic skills, Jake has incredible working memory, is completely mobile, and articulates every want and need he has; he strives for full independence in the world.

Though we had just had our second child that year, my husband and I made a conscious decision to take on the role as the support system for Jake rather than continue to expand our family. We wanted to do whatever we could to help him lead an independent, meaningful life, something that did not always happen when he was living in his mother’s basement in Alabama. To accomplish this goal, which is ongoing and cyclical, we have spent the last twelve years learning the process of getting supports and services.

I knew nothing about Medicaid or how it could change the life of someone like Jake until we got him a coveted waiver spot for short-term support. Because of these supports, Jake is able to live by himself in a small apartment directly across the street from our house. He has full access to the community and the supports that he needs. My husband and I help to manage the people that work with Jake, but he is the one that drives his own services. He works every day on the goals he decided would help him towards independence: preparing his own meals, advocating his needs to his landlord and others, spending money within a budget, and maintaining his own living-space. Jake has also made meaningful connections with people in our broader community- people other than his family and support staff who look out for him and value his friendship and contributions.

My family structure is in balance because of Medicaid; without it, Jake’s world looks very different, and frankly, so does mine. My husband can continue working as a high school principal. I can continue working at my job as a clinical social worker and full-time advocate for people with intellectual and developmental disabilities. Our two teenaged daughters have the space they need to grow without always having to share time and attention with their uncle. Most importantly, Jake has the life he never thought was possible.

Clearly, our entire family would be greatly impacted if Jake lost his Medicaid services. The tax plans moving through Congress dramatically reduce the revenue that the federal government uses to pay for critical programs such as Medicaid. Act now by calling your Members of Congress to ask them to oppose this dangerous bill.

Jake and his family

Kevin, Melinda, Jake, Georgia, and Juliet Plue

MediSked Applauds Strong Disability Rights Advocacy at The Arc of North Carolina

By Linda Nakagawa, Market Policy Analyst, MediSked

Advocacy is the foundation upon which the disability community has grown into a powerhouse. The future of the movement depends on the many advocates across the country who are engaging on the local, state, and national levels to protect the rights of people with disabilities and support their inclusion in the community.

The Arc of North Carolina uses MediSked products for data tracking in their service delivery. The chapter is also an advocacy leader in the state, and we have long admired their strong commitment to their advocacy work. So we reached out to Melinda Plue, Director of Advocacy and Chapter Development at The Arc of North Carolina, to share some of the advocacy efforts the state chapter and its 23 member chapters have made this year.

The Arc of North Carolina has made use of the comprehensive advocacy toolkit provided by The Arc of the U.S. to play an active role in the fight to save Medicaid this year. Self-advocates and family members wrote powerful letters that were sent to The Arc to hand-deliver for state delegations. At the state level, The Arc of North Carolina has done media campaigns, lobbying, and rallies. The success of advocacy depends on real life stories, heartfelt letters as well as real data to back up the facts on which these issues are based.

Another area where The Arc of North Carolina has been especially active is in grassroots local advocacy and community engagement, in partnership with their member chapters. Some actions include:

  • Barrier Awareness Day: The Arc of Davidson County is hosting Barrier Awareness Day, to give individuals without disabilities the chance to navigate through life as someone who does experience a disability. Participants engage in simulations that mimic mobile, visual, and hearing impairments and are taken out into the community. The event leads residents to really think about the accessibility of their community.
  • Wings for Autism/Wings for All: Many chapters of The Arc in North Carolina participate in Wings for Autism®, a grant-funded program from The Arc’s national office that simulates an airport experience for individuals with autism spectrum disorder and individuals with I/DD. The program gives families the opportunity to experience, at no cost, all the processes involved with air travel.
  • Self-Advocates’ Conference: The Arc of Greensboro, The Arc of High Point, The Arc of Davidson County, and The Enrichment Center in Winston-Salem host a conference for self-advocates around the state. The conference, which is entering its sixth year, is planned by self-advocates and staff from the four chapters and focuses on vital information that self-advocates have identified wanting to learn more about. Beginning in March of 2018, this conference will be a part of the state’s annual Rooted in Advocacy conference, hosted by The Arc of North Carolina, as it has become so well-attended.
  • Self-Advocacy Movement: Self-advocates must be decision-makers during conversations that involve the disability community and for causes they are passionate about: “Decisions ABOUT me should INCLUDE me.” The current board president of the state chapter is a self-advocate, and self-advocates are on just about every board of local chapters of The Arc. The chapters of The Arc are proud of supporting self-advocates to teach them how to get involved on boards, not only at The Arc but for other organizations in their community.
  • Advocacy in Public Schools: Staff resources are dedicated to support families as they move through the special education process. Many local chapters and the state work together to empower families and teach them how to advocate for their children.

To know where advocacy can be most effective, you need to know who you serve and communities in which people with intellectual and developmental disabilities live alongside people without disabilities. MediSked partners with The Arc and supports chapters of The Arc across the country with MediSked Connect – Agency Management Platform. MediSked Connect is a platform that streamlines procedures and centralizes data with tailored workflows, detailed service documentation, holistic health data, outcome tracking and reporting, and integrated billing management that is implemented in a collaborative process with each agency.

This year, more than ever, we have been proud to partner with so many strong organizations as they deliver services in their community and fight for the future of services and supports for people with disabilities.

 

Attack on SSI: House Approves Cutting Off Basic Income for Adults with Disabilities and Seniors

Washington, DC – Today, the U.S. House of Representatives voted 244 to 171 to revive a failed former policy that cuts off Supplemental Security Income (SSI) benefits for certain people with disabilities and seniors. The legislation targets SSI recipients with outstanding arrest warrants for alleged felonies or alleged violations of probation or parole. Federal law already prohibits payment of SSI benefits to people fleeing from law enforcement to avoid prosecution or imprisonment, and the Social Security Administration has a process in place to notify law enforcement of the whereabouts of such individuals. The original policy ended due to class action litigation.

“This bill is unjust, cruel, and unnecessary, and shows total disregard for the day to day economic struggles of most SSI beneficiaries. SSI benefits average $18 per day and are the only personal income for nearly three in five beneficiaries. Cutting off these modest SSI benefits will cause significant hardship and will only make it more difficult for people to resolve old, outstanding arrest warrants. The Senate should reject this tried and failed approach,” said T.J. Sutcliffe, Director, Income and Housing Policy.

Based on experience with the former policy, H.R. 2792 would not help law enforcement to secure arrests, but instead would target people whose cases are inactive and whom law enforcement is not pursuing. Most of the warrants in question are decades old and include warrants routinely issued when a person was unable to pay a fine or court fee, or a probation supervision fee. Many people are not even aware that a warrant was issued for them, as warrants are often not served on the individual. Some people will be swept up because of mistaken identity, or paperwork errors, which can take months or even years to resolve. Many people will face barriers to clearing their records based on the nature of their disabilities or their current circumstances, for example, an individual with Alzheimer’s in a nursing home.

Resolving an old arrest warrant can often involve significant time and expense, such as when a person has moved and lives far from the jurisdiction that issued, but never pursued, a decades-old warrant. Anecdotally, a very high percentage of people affected by the former policy were people with mental impairments, including people with intellectual disability.

The proposal uses savings from cuts to SSI under H.R. 2792 to pay for legislation to reauthorize the Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program.

“Home visiting helps to improve maternal and child health and increases access to screening and early intervention for children with disabilities. Reauthorization of this valuable program should not be paid for by cutting off SSI for people with disabilities, seniors, and their families,” said Sutcliffe.

As highlighted in a fact sheet by the Consortium for Citizens with Disabilities, here are two stories of people harmed by Social Security’s former failed policy: Rosa Martinez, the lead plaintiff in one of several class action law suits brought against the policy, and a juvenile survivor of childhood abuse:

  • Mistaken Identity: Rosa Martinez, the lead plaintiff in Martinez v. Astruewas, in 2008, a 52-year old woman who received notice from SSA that she was losing her disability benefits because of a 1980 arrest warrant for a drug offense in Miami, FL. Ms. Martinez had never been to Miami, never been arrested, never used illegal drugs, and is eight inches shorter than the person identified in the warrant. Despite an obvious case of mistaken identity, Ms. Martinez was left without her sole source of income while she cleared up the error on her own, without any help from SSA. It was only after filing a lawsuit that Ms. Martinez was able to receive her benefits.
  • Juvenile Survivor of Childhood Abuse: A young man in California with intellectual disability and other mental impairments had his SSI benefits stopped because of an Ohio warrant issued when he was 12 years old and running away to escape an abusive stepfather. The 4’7” tall, 85-pound boy was charged with assault for kicking a staff member at the detention center where he was being held until his mother could pick him up. Many years later, he had no recollection of the incident.

More stories of people harmed by SSA’s former failed policy are available from Justice in Aging.

 

The Arc advocates for and serves people wit­­h intellectual and developmental disabilities (I/DD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with I/DD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

The Arc Responds to Graham-Cassidy-Heller-Johnson Health Care Proposal

Architects of this bill are still ignoring the pleas of their constituents with disabilities

Today, U.S. Senators Lindsey Graham (R-SC), Bill Cassidy (R-LA), Dean Heller (R-NV), Ron Johnson (R-WI) and former US Senator Rick Santorum (R-PA) unveiled the latest attempt to repeal the Affordable Care Act. The Arc released the following statement in response:

“While this piece of legislation has a new title and makes new promises, it is more of the same threats to Medicaid and those who rely on it for a life in the community. The Graham-Cassidy-Heller-Johnson proposal cuts and caps the Medicaid program. The loss of federal funding is a serious threat to people with disabilities and their families who rely on Medicaid for community based supports.

“Many of the provisions in this legislation are the same or worse than what we encountered earlier this year, which shows that the architects of this bill are still ignoring the pleas of their constituents with disabilities. The talking points sugar coat it, but the reality is simple – under this proposal less money would be available despite the fact the needs of people who rely on Medicaid have not decreased.  The Arc remains staunchly opposed to legislation that includes per capita caps or block granting of Medicaid. We need Members of Congress to find a solution that actually takes into consideration the needs of people with intellectual and developmental disabilities,” said Peter Berns, CEO of the The Arc.

What Do Moms Need?

Last week, The Arc was excited to join nearly 50 national organizations that co-sponsored the #MomsDontNeed / #LasMamásNoNecesitan Tweet storm. On Twitter, we called attention to recent actions and policies that threaten mothers and families, and highlighted the kind of supports they and all people truly need to protect and advance their economic security, health, and more.

Moms with disabilities, and moms of children with disabilities, do so much. And across the nation, moms are working harder than ever. With Congress considering legislation to devastate our health care system, and with new reports of major cuts in the works to Medicaid, Social Security disability benefits, and other effective federal programs, so much is at stake – for moms, and for all of us. As The Arc celebrates Mother’s Day, here are three things that we know are vital to supporting mothers and their many contributions.

1. Access to Health Care and Long-Term Supports and Services. Health insurance under the Affordable Care Act can make all the difference in the world. Just listen to Lindsay, mother of toddler Calvin, if you’re not sure why. In addition, for many people with intellectual and developmental disabilities, Medicaid provides a range of essential medical and long-term supports and services that make community living a reality and for many, can be the difference between life and death. Unfortunately, the American Health Care Act (AHCA) – passed recently by the House of Representatives and now before the Senate – shows callous and dangerous disregard for the wellbeing of people with disabilities and their families. Among the bill’s many harmful provisions, the AHCA would decimate Medicaid, erase health insurance cost protections for people with pre-existing conditions, and cause people to lose essential health benefits under state waivers. The AHCA is one bill that #MomsDontNeed.

2. Economic Security. For most moms and families of children and adults with intellectual and developmental disabilities, every penny counts. For example, raising a child with disabilities can be tremendously expensive due to major out of pocket medical and related costs, like adaptive equipment and therapies. For many families, earnings from work aren’t enough to maintain a basic standard of living and cover these often-extraordinary disability-related costs. It’s only possible because of income from Social Security’s disability programs, including Supplemental Security Income (SSI). Unfortunately, recent news reports suggest that President Trump’s 2018 budget will propose major cuts to Social Security disability benefits, as well as Medicaid and a host of other programs – totaling $800 billion in cuts. That’s another devastating idea that #MomsDontNeed.

3. Paid Family and Medical Leave. Moms with disabilities, and moms of children with disabilities, know better than most that time is a precious resource. At The Arc, we hear often from moms and dads struggling to get enough paid time off work: to be with a new baby in the Neonatal Intensive Care Unit; to care for a new baby with disabilities when they first come home; to take their son or daughter to medical appointments, therapies, and after school programs; to attend IEP meetings and other school appointments – and so much more. And while we all love Wonder Woman, let’s face it, moms get sick, too. Moms shouldn’t have to choose between a pay check and a child’s health, or a pay check and their own health. Not moms, not anyone. That’s why The Arc is joining the call for a robust federal paid family and medical leave program. We hope you’ll #JoinOurFight!

The Arc Responds to House Passage of The American Health Care Act: “Shows callous and dangerous disregard for the wellbeing of people with disabilities”

Washington, DC – The Arc released the following statement following the House of Representatives passage of the American Health Care Act (AHCA), with the addition of amendments that take the bill from bad to worse for people with intellectual and developmental disabilities (I/DD) and their families:

“Members of the House of Representatives who supported the American Health Care Act voted against their constituents with intellectual and developmental disabilities. We won’t soon forget those who so willingly ignored the pleas of their constituents who rely on the Affordable Care Act and Medicaid for comprehensive health care coverage and long term services and supports that enable them to live full lives in the community. We must call this what it is – an attack on the rights and lives of people with disabilities.

“The federal government will be walking away from a more than 50 year partnership with states when it comes to Medicaid. Deep cuts and radical restructuring will decimate the Medicaid program. With an over $800 billion cut to Medicaid, states will face difficult choices about what people to cut from the program or what services to roll back. Optional services like home and community based services are likely to be cut. Lives will be lost when people are unable to access the health care and community supports they need.

“The plan that passed the House today is insufficient to keep people with disabilities insured or to support anyone with complex medical needs. If signed into law as currently written, this bill will result in people with disabilities and their family members losing health coverage in the private insurance market and in Medicaid. Coverage also becomes unaffordable as people with pre-existing conditions lose protections against higher premiums.   Those lucky enough to retain their coverage will find that some of the services they need – Essential Health Benefits – are no longer available.  And Medicaid funded long term supports and services, which help people live independently and be included in their communities, will be even scarcer as waiting lists for services will grow all across the country.  Some may end up living in nursing homes and institutions because community services are no longer available.

“The American Health Care Act shows callous and dangerous disregard for the wellbeing of people with disabilities and their families and erases decades of progress.  Now we turn to the Senate, our last line of defense. We intend to work with Senators on both sides of the aisle to oppose this harmful legislation. We continue to encourage disability advocates across the country to reach out to their Senators to voice their concern about this bill,” said Peter Berns, CEO, The Arc.

This week, The Arc released another video illustrating how Congress’ proposed changes to the ACA and Medicaid would negatively impact Americans with disabilities and their families. The video features an interview with Toby, Lindsay, and Calvin from Fairfax, VA. Calvin has Bilateral Fronto-Parietal Polymicrogyria and Cerebral Palsy and relies on multiple insurance plans to cover his medical and therapeutic treatments.

This video is the second in a series of videos The Arc will be releasing in the coming weeks, sharing the personal stories of people with disabilities and their families, and the impact of the ACA and Medicaid on their lives. The first video featured nine people who rely on the ACA and/or Medicaid, and each one has a personal message for Members of Congress and the Trump Administration.

The Arc on the Reintroduction of ABLE Act Improvement Bills

By: Mike Nagel, Program Associate

Eight members of Congress have re-introduced three bipartisan bills to make improvements to the Stephen J. Beck, Jr. Achieving a Better Life Experience (ABLE) Act. These bills, listed below, are similar to three bills introduced last year:

  • The ABLE Age Adjustment Act (R.1874/S.817) is sponsored by Representative Tony Cardenas (D-CA) in the House, with Representatives Cathy McMorris Rodgers (R-WA), Pete Sessions (R-TX), Christopher Smith (R-NJ), and James Langevin (D-RI) as original co-sponsors; and by Senator Robert Casey (D-PA) in the Senate, with Senators Richard Burr (R-NC) and Chris Van Hollen (D-MD) as original co-sponsors. This bill raises the age of onset of disability for eligibility in the program from before age 26 to before age 46.
  • The ABLE Financial Planning Act (R.1897/S.816) is sponsored by Representative McMorris Rodgers in the House, with Representatives Sessions, Cardenas, Smith, and Langevin as original co-sponsors; and by Senator Casey in the Senate, with Senators Burr and Van Hollen in the Senate. This bill would allow a transfer of funds from a Section 529 College Savings Plan account to an ABLE account. However, funds transferred to the ABLE account would still count toward the annual contribution limit (currently $14,000).
  • The ABLE to Work Act (R.1896/S.818) is sponsored by Representative McMorris Rodgers in the House, with Representatives Sessions, Cardenas, Smith, and Langevin as original co-sponsors; and by Senator Burr, with Senators Casey and Van Hollen as original co-sponsors. This bill would increase the annual contribution limit for individuals who work by the amount they earn, up to the federal poverty level (currently $11,770). When combined with the current annual contribution limit, this bill would allow annual contributions to an ABLE account of up to a total of $25,770 for people who work. Furthermore, it makes contributions to one’s own ABLE account eligible for a Saver’s Tax Credit. However, income earned will still count toward substantial gainful activity for SSI and Medicaid eligibility.

Last year, the Senate Finance Committee approved the ABLE Financial Planning Act and the ABLE to Work Act as amendments to a larger bill, the Retirement Enhancement and Savings Act of 2016 (S.3471). However, the bill did not reach the Senate floor, and no further action was taken. With the start of the 115th Congress in January, the bills must begin the legislative process again in both the House and Senate.

The Arc supports all three bills and believes they offer meaningful improvements to the ABLE
Act. However, on the basis of fairness and equity, The Arc opposes the movement of the ABLE to Work Act or ABLE Financial Planning Act before movement of the ABLE Age Adjustment Act. The ABLE Age Adjustment Act makes more individuals eligible for the program while the other two bills improve the program only for people who are currently eligible. When the ABLE Act was passed in 2014, there was no philosophical basis for limiting the program to those disabled before the age of 26. The bill had been amended to add the age restriction in order to minimize the fiscal impact; in response to disability community concerns, House leadership made commitments to begin restoring the eligibility age as soon as possible. Many people with disabilities who advocated for the law were made ineligible by the age limitation; fairness and equity demand that efforts go to expand eligibility before making the law better for those already eligible.

Many of The Arc’s constituents are among those excluded due to the age of onset requirement. Intellectual disability and developmental disabilities begin before age 26 by definition. However, not all people with I/DD are considered to have the level of severity which allows eligibility for Supplemental Security Income (SSI) or Social Security disability programs—the standard used for ABLE accounts. However, they may reach the necessary severity level, and possible eligibility for the ABLE program, as they age and acquire additional limitations, depending on whether the ABLE program age of onset is increased.

The Arc will continue to support all three bills, but we emphasize that the ABLE Age Adjustment Act should be passed before or together with the other bills.

Stories make us stronger: Please share yours through the 2017 FINDS survey

By: Amie Lulinski, PhD, FAAIDD
Director, Research and Evaluation

Data comes in a variety of forms: charts, graphs, spreadsheets, reports, articles. No matter the shape it takes, data tells a story. Those stories play a powerful role in advocacy through demonstrating the great things people with intellectual and developmental disabilities (I/DD) are doing as well as showing where the gaps in supports and services remain. These gaps can become giant caverns in the life of individuals with I/DD and keep them from realizing their full potential.

Our advocacy for and with individuals with I/DD is at its best when we have concrete data to back it up. That’s why we need your input on our crucial FINDS Survey. In 2010, The Arc and the University of Minnesota’s Research and Training Center on Community Living conducted the Family and Individual Needs for Disability Supports (FINDS) Survey: a groundbreaking and needed examination of the supports that people with I/DD receive across the country. The research team received responses from parents, siblings, and other caregivers detailing their perspectives on the supports their clients and loved ones receive in education, employment, community living, and other life-span activities.

The results of this survey, highlighted in a summary report published by The Arc in 2011, revealed that many people with I/DD were failing to receive the supports needed to live independent and fulfilled lives. For example, the 2010 data told us that 60% of family caregivers provide 40 or more hours of support per week. This data is used to advocate at the federal and state policy levels for increased funding in in-home supports and respite services.

In an effort to remain informed and responsive to the challenges facing today’s disability community, The Arc and the University of Minnesota are conducting the 2017 FINDS survey. This survey comes at a critical time for many within our community, as current proposals will have an impact on the future of many of the funds and support services that people with I/DD currently benefit from. Please help us paint a modern and diverse picture of I/DD across America by participating in the 2017 FINDS survey.

The survey seeks caregivers (family or otherwise) living in the US and its Territories aged 18+ who provide frequent, primary support to share their experiences. The deadline to submit a completed survey is April 30. Please click on this link to fill out a survey online, download a copy in English or Spanish, or forward the link to a friend!

Please let me know if you have any questions by emailing me at Lulinski@thearc.org.

 

Everyone’s Right to Reach your Unimaginable Heights

By: Nicole Jorwic, Director of Rights Policy, The Arc of the United States, and oldest of four.

There is a saying that goes, “the two greatest gifts that a parent can give a child are roots and wings.” These are gifts that I have been lucky enough to receive, along with my siblings, including my brother Chris who has autism. My brother Chris is nonverbal, and it wasn’t until he was in his late teens that we appreciated his true intellectual capacity. Before that he was “locked away,” his words, “by autism.” My parents, even before we knew Chris’ true level of intelligence, presumed his competence and pushed his teachers, therapists and service providers to think beyond his disability.  It is with that perspective that I read the recent New York Times Magazine Article “Should Parents of Children With Severe Disabilities Be Allowed to Stop Their Growth?”

The article highlights the incidents of parents of children with severe physical and cognitive disabilities unnaturally stunting the growth of their children, in order to make it easier to care for them at home throughout their lifetime. This decision, I can imagine, is not come to without a great deal of deliberation and trepidation. However, it should not be the parent’s choice to make. The Arc’s Health Position Statement is clear:

“Treatments for persons with I/DD that are proposed primarily for the convenience of the caregiver (such as medical procedures that interfere with typical growth and development) must be denied.”

The decision making process, outlined in this piece, is based on the needs and desires of the caregivers, and completely removes the voice and rights of that child with a disability.

The parents are also making the decision based on information that they have received from doctors about their child’s developmental age and potential. This is science that is imperfect at best. As noted in the article, there is “a significant body of research shows that the intellects of people with severe motor impairments can be grossly underestimated.”

With this incomplete information decisions are made, despite the reality that many individuals, including my brother’s, intellectual capacities are not known or can evolve over their lifetimes, especially when they find a means to communicate. This is proven true with the child who is featured in the story. Ricky has “shown signs of purposeful movement, an important developmental milestone, by using a head-motion-activated assistive-communication device to stop and start videos at his school for the visually impaired.” This development is, I am sure, treasured by the family, but it also shows that Ricky’s right to self determination was eliminated by the decision to stunt his growth. As is clearly stated in The Arc’s Rights Position Statement regarding self determination:

“People with intellectual and/or developmental disabilities have the same right to self-determina­tion as all people. They must have opportunities and experiences that enable them to exert con­trol in their lives and to advocate on their own behalf.”

The ability to assert control in their lives was violated by the decision to stunt their growth, and the rights of these children were breached. There is a dignity of risk for all of us, including individuals with intellectual and/or developmental disabilities. That includes the right to grow, make mistakes, and to thrive. Perhaps what these families should be advocating for is not the ability to stop their child’s growth, but, what should be advocated for is better technology to help the children communicate their wants and needs, as well as technology and better supports that will make it easier for their children, as they grow into adults, to stay at home. That growth will come from roots, planted in the belief that every person has a right to reach their full physical stature and their full potential. All of us grow in ways we couldn’t have imagined as children, and all people with disabilities must be afforded the right to achieve those “unimaginable” heights.

“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.