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.

Emergency Weekend Medicaid Matters to Me Letter Writing Campaign – Deadline Extended!

The Senate is set to vote soon on the latest version of the Better Care Reconciliation Act. The latest revisions to the bill do NOT change the devastating cuts to the Medicaid program that over 10 million people with disabilities rely on to live and work in their communities. The time is now to take action and tell your Senators why Medicaid Matters to You and Your Family

Take a few moments to write a brief message about how Medicaid impacts your life. Please send those messages in the body of an email to Nicole Jorwic at The Arc of the United States: jorwic@thearc.org. PLEASE INCLUDE YOUR STATE IN THE SUBJECT LINE OF THE EMAIL. We will hand deliver all the printed messages to the Senators from your states this week. So please act fast, e-mails must be received by midnight on Wednesday, July 19 to be printed.

We want to show strong support for Medicaid from all over the nation, but we are particularly looking for letters from the following states:

  • Nevada
  • West Virginia
  • Alaska
  • Louisiana
  • Ohio
  • Arizona
  • North Dakota
  • Kansas

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.

RE: Clemency for Ledell Lee

Dear Governor Hutchinson:

I write on behalf of The Arc of the United States (The Arc) to urge you to commute the death sentence of Ledell Lee pending a full clinical evaluation to determine whether Mr. Lee has an intellectual disability (ID). The Arc is a national non-profit organization which, for over 65 years, has sought to promote and protect the civil and human rights of individuals with intellectual and developmental disabilities through the work of its national office and over 650 state and local chapters throughout the country. Through its National Center on Criminal Justice and Disability®, The Arc seeks justice for those with ID who find themselves entangled in the criminal justice system, often without necessary accommodations or understanding of their disability.

The Arc has deep sympathy for the family and friends of the victims in this case, and we support appropriate punishment of all responsible parties. However, Mr. Lee’s history is replete with evidence indicating a potential ID diagnosis, which would bring him under the protection of the United States Supreme Court’s decisions in Atkins v. Virginia, 536 U.S. 304 (2002), Hall v. Florida, 134 S. Ct. 1986 (2014), and the more recent decision in Moore v. Texas, No. 15–797, slip op. (U.S. Mar. 28, 2017).

In its 2002 Atkins decision, the U.S. Supreme Court recognized the special risk of wrongful execution faced by persons with ID (formerly termed “mental retardation”) and banned the execution of persons with ID as cruel and unusual punishment under the Eighth Amendment, noting that individuals with ID “do not act with the level of moral culpability that characterizes the most serious adult criminal conduct” and that “[n]o legitimate penological purpose is served by executing a person with intellectual disability…to impose the harshest of punishments on an intellectually disabled person violates his or her inherent dignity as a human being.” In its 2014 Hall decision, the U.S. Supreme Court further clarified its decision that people with ID not be executed in violation of the Constitution, requiring that adaptive behavior evidence, beyond IQ test scores alone, be taken into account when determining whether an individual has ID. The more recent Moore case further confirms adaptive behavior criteria as necessary in determining whether someone meets diagnostic criteria for ID, and that such criteria must comport with modern clinical and scientific understanding of ID.

The evidence presented by the neuropsychological expert in this case, Dr. Dale Watson, supports the conclusion that if Mr. Lee undergoes a full evaluation, he will likely meet the three prongs of an ID diagnosis: (1) significantly impaired intellectual functioning; (2) adaptive behavior deficits in conceptual, social, and practical adaptive skills; and (3) origination of the disability before the age of 18. In order to complete his analysis, Mr. Lee’s adaptive deficits and history during the developmental period (before age 18) need to be fully assessed. Individuals with ID—like everyone else—differ substantially from one another. For each person with ID there will be things he or she cannot do but also many things he or she can do. Because the mixture of skill strengths and skill deficits varies widely among persons with ID, there is no clinically accepted list of common, ordinary strengths or abilities that would preclude a diagnosis of ID. Thus, the focus in assessing an individual’s adaptive behavior must be on deficits. As recently confirmed in Moore, adaptive strengths are irrelevant to this analysis and IQ alone cannot paint a full picture of whether a person has an ID. Thus, we urge that Mr. Lee receive a full evaluation for ID to determine whether he may be eligible for the Atkins constitutional protection from the death penalty.

Given the high likelihood of ID in this case, it is troubling that the lawyers who represented Mr. Lee throughout his trial failed to properly investigate evidence of Mr. Lee’s potential ID. As a result, no evidence of Mr. Lee’s potential disability was presented to the jury during the sentencing phase of his trial. If a full evaluation confirms Mr. Lee’s suspected diagnosis of ID, then Mr. Lee’s death sentence violates current prohibitions against cruel and unusual punishment as set forth in the U.S. Supreme Court decisions in Atkins, Hall, and Moore.

The Arc does not seek to eliminate punishment of Mr. Lee or others with disabilities, but rather, to ensure that justice is served and the rights of all parties are protected. The Arc is committed to seeking lawful outcomes for people with ID and will continue working to ensure that the U.S. Supreme Court rulings on this issue are abided by in jurisdictions across the country. I humbly ask that you consider commutation to address the possibility of an unconstitutional miscarriage of justice in the case of Ledell Lee.

Most respectfully,

Peter V. Berns
Chief Executive Officer
The Arc of the United States

Voting Independently With A Disability Is Possible

When I became old enough to vote, I didn’t think I could because I can’t write due to having cerebral palsy (CP). A few years later, I was in an independent living program which taught me many skills that I needed to know in order to live on my own, and one thing I learned is that I had the right to ask a polling person to assist me in filling out my voting ballot. This helped reduce my fears around voting. So, when the next election came around, my boyfriend– Juan, who also lives with CP and needed help writing– and I decided to go vote for the first time. It took us two and a half hours because there was a long line, then when we finally made it to the front of the line, we had to wait for one polling assistants to become free to help us (one at a time). We both were dissatisfied with the process because we didn’t view it as very fair. We felt uncomfortable because we weren’t taken to a private area, so anyone could have overheard our vote. Plus, we were also discouraged when we realized that even if we were taken to a private area, our vote would never be truly private because the person who assisted us would know how we voted. This discouraged us from voting again for several years.

Then, in 2010, I got a job working with the Coalition of Texans with Disabilities. One of the first projects they had me working on was about voting and trying to get more people with disabilities to get out and exercise their right to vote. While working on the project, I learned about a pair of jelly switches– big round buttons that could be plugged into accessible voting machines to help with the process of voting. These buttons are for people with disabilities who don’t possess good dexterity and fine motor control. These buttons can be placed anywhere needed for them to be accessible. One button allows the voter to move throughout the ballot, while the other was to make selections. I discovered these were perfect for me because I could operate them with my feet. I was excited to be able to cast my ballot by myself and in private!

The next time elections rolled around, there were accessible machines at almost every polling place and I was anxious to put what I had learned into practice. So I went into my polling place and told them I wanted to use the jelly buttons to cast my own ballot. They got the polling person who had been trained on the adaptive equipment. She hooked up the buttons, then we figured out that the best place for me to put them was on the foot pedals of my wheelchair. Then, I spent the next 20-30 minutes casting my own private ballot. When I finished, they were as excited for me as I was for myself. As I walked out of the building with my ‘I Voted’ sticker on me, I had tears in my eyes– as I do right now– because it meant that much to me.


Susie Angel has an Associate’s Degree in Communications from Austin Community College and a Bachelor’s in Magazine Journalism from the University of Texas at Austin. She has worked as a secretary/office manager for several years and has experience as a job developer/ job coach for people with disabilities. Susie joined Coalition of Texans with Disabilities (CTD) as a VISTA in 2010 and joined the staff as a part-time employee in 2012. She edits and writes for the monthly e-newsletter, co-coordinates Pen 2 Paper, and heads up CTD’s research department. She sits on the advisory boards for SafePlace and the Austin Interfaith Inclusion Network. Susie was raised in Boston and California before moving to Austin in 1987. Her hobbies include creative writing, dramatic performance, mixed-ability dancing, modelling, and watching baseball with her other half.

Celebrating Friendship

Sisters Holding Hands[1]By Jennifer Sladen, Program Manager, National Initiatives

In the hope that fostering friendships between people with different backgrounds, countries, and cultures would lead to peace by inspiring communities to connect with and better understand each other, the United Nations General Assembly proclaimed July 30th International Day of Friendship. On this sixth International Day of Friendship, let’s take a moment to reflect on how we can support people with intellectual and developmental disabilities (I/DD) to be a part of this drive to make connections and create friendships.

A few years ago, I attended a conference for direct support professionals. Al Condeluci, the CEO of Community Living and Support Services (CLASS) in Pennsylvania and a partner in the Interdependence Network, addressed the room, asking a simple question – “Who is the best friend of the person with I/DD you serve?”

The room was silent. Not because no one knew the answer, but because no one wanted to say the answer.

Dr. Condeluci pressed the group, “Who is their best friend?”

A voice near him spoke quietly, “Me.” Around the room, professionals started nodding their heads in agreement.

Silently, Dr. Condeluci walked back to the center of the room. After a pause, he said, “Being friends with the people we serve is great, but we are not always going to be there. Success is not going to an amusement park and hanging out with people with I/DD but hanging out a seat or two behind the person with I/DD and their friend on the roller coaster.”

All around the room, lightbulbs went off in people’s heads. Hands raised, asking for help and advice on how to make this happen for the people they serve.

Dr. Condeluci’s answer was not complex:

  • Give people the opportunity to form friendships with new people of all abilities, not just the professionals they interact with.
  • Encourage the people you serve to engage actively in the world and with the people around them.
  • Educate people who are uncomfortable around or ignorant about people with disabilities to encourage them to make these friendships.

Thanks to shows like A&E’s reality show, “Born This Way”, as well as the increasing number of characters with disabilities in movies and TV shows, the dialogue around our country about how people with I/DD make friends, date, and live independently is growing. But, all of us can do more to make sure that people with I/DD in our lives have opportunities to connect with people of all abilities.

People with I/DD, here are a few ideas on connecting socially:

  • Pursue activities and opportunities based on your own interests. After you have decided what you would enjoy, think about what support you will need to participate and who you would like to provide that support. If it turns out that there aren’t other people with I/DD who participate, go ahead. You can be a trailblazer!
  • Seek out friendships with whomever you want to be friends with.
  • Be yourself and open to new activities and new friendships.
  • If you have trouble making new friends or if you have disagreements with friends, talk to the people you trust about how to address these issues.
  • Advocate to include other people with I/DD in events and activities you attend.

 

Families and Professionals, you can:

  • Encourage people you know to include people with I/DD in events and activities and promote understanding by talking about the value that the people with I/DD bring to your life.
  • Make space and time for people with I/DD to make friends, pursue activities, and participate in the community.
  • Encourage new experiences, especially if the person is scared or unsure.

We encourage you to explore The Arc’s Center for Future Planning for ideas about how to build relationships and pursue new experiences. And, if you are a fan of “Born This Way”, register today to attend The Arc’s 2016 National Convention and International Forum to meet the cast!

A National Call to Action on Toxic Environmental Chemicals

Last year a group of nearly 50 leading scientists, health professionals and providers, and children’s health and disabilities advocates (including The Arc) came together out of concern over the growing link between toxic environmental chemicals and neurodevelopmental disabilities. Last week, we issued a consensus statement under the banner of Project TENDR: Targeting Environmental Neuro-Developmental Risks.

Our statement is a national call to action that seeks to significantly reduce exposures to chemicals and pollutants that are contributing to autism spectrum disorder, attention deficits, hyperactivity, intellectual disability, and other conditions.  Prime examples of these are chemicals in everyday use to make plastic more flexible, upholstery less flammable, and crops more plentiful.

The prevalence of neurodevelopmental disabilities has been increasing significantly according to the CDC, while the programs and services that are needed to support them remain under attack.  It’s time to change how we do business in prevention.  We need to shift the burden of proof to show that chemicals are safe before we allow them to affect a baby’s developing brain.

Read the New York Times and CNN coverage of the consensus statement.  For more information about Project TENDR, see http://projecttendr.com/

While we must work together to prevent developmental disabilities resulting from toxic exposures, we must work simultaneously to protect the services and supports for those who live with these disabilities now.  Want to get involved in advocating for services and supports for people with disabilities? Sign up for The Arc’s Disability Advocacy Network.

Moving to a New State Can Get Complicated   

By Wendy H. Sheinberg, CELA

Moving to another state is a challenge for most families. If a family member has disabilities, that challenge is even greater. State benefit programs vary, and states administer federal programs at the local level making it even more complex. When a member of your family has disabilities, it pays to do plenty of upfront research and to construct a “safety net” to protect against unanticipated gaps in service, problems and delays.

Health Care

Over the years, you have probably spent considerable time scouting for doctors, therapists, and other service providers to meet your loved one’s specific needs.  Be prepared to start over.

First, there’s the question of insurance. If you have a private policy, perhaps through an employer, moving to a new state may mean a new policy with different coverage or different premiums. If you have purchased coverage under the Affordable Care Act (ACA) through a state insurance exchange, you will need to learn what is available in the new location. ACA typically provides for a 60-day special enrollment period when a permanent move requires a change in health plan. To be safe, check on eligibility requirements early.

Medicaid is even more complicated, since you must reapply once you have moved. It can take anywhere from 15 to 90 days for approval to come through, although coverage will be retroactive. In the meantime, you will need to make other arrangements to handle critical needs.

Medicare is a federal program. Moving to a new state should not affect Medicare benefits. However, it is important to review and confirm that your Medicare supplemental policy and your prescription drug plan provide coverage in the new state.

Once you understand how you will be paying for health care, you will need to determine what resources are available. Local advocacy groups─ such as chapters of The Arc─ will likely be a source for advice and referrals. To minimize disruptions, establish as much of your new provider network as possible ahead of time.

Interview early intervention services and doctors before you relocate—ideally face-to-face, or by traditional or video teleconference, if necessary. Have medical records sent ahead to new physicians and schedule visits as soon as possible once you’ve moved. Ask your new insurance provider to pre-authorize prescriptions, and bring at least a 30-day supply of important medications with you.

Special Education

While the Individuals with Disabilities Education Act (IDEA) requires your new school district to provide services and supports comparable to those provided in the existing Individualized Education Program (IEP), you may have to renegotiate the IEP. Additionally, a 504 plan or other modified curriculum may also require renegotiation. The good news is that your existing records should provide a strong foundation for new discussions. In fact, if it’s time for the current plan to be updated, do so before the move so that your assessments and supporting materials are as current as possible. It can be hard to get school files during the summer, if you are moving during the summer, be sure to get the needed copies before classes end.

For military families, who generally relocate every few years, this is a recurring problem. Check out the Department of Defense’s special ed checklist.

Decision-Making Supports and Guardianship

Decision-making support can vary from state to state. If your adult child has executed a power of attorney, health care proxy or a supported decision-making agreement, consult with a special needs attorney in the new state to confirm their validity.

If your family member has a court-appointed guardian, you should consult a special needs attorney in both locations to understand your particular situation. Some states require that the guardian obtain court approval before the person under guardianship moves to another jurisdiction. You may also want to take this opportunity to explore a less restrictive means of providing support in the new state.

 

Many states do not recognize guardianships granted elsewhere. Unless both states have signed a reciprocity agreement, you could face different definitions of capacity, restrictions on a guardian’s role and more. Even if your new state will recognize a guardianship originated in your home state, most uniform guardianship statutes require some form of filing with the court in the new state.

SSI/SSDI

If you inform the Social Security Administration of your new address early, there should be no disruption to your SSI (Supplemental Security Income) or Social Security disability benefits. However, the amount of your monthly SSI payment could change, since it has both federal and state components. There will be no difference in Social Security disability benefits, based on work history of the individual or their parent.

SNAP (Food Stamps)

Check regulations in your new home state ahead of time, since there are differences in how this federal program is implemented locally. In some areas, there are significant asset limits for people with disabilities.

Social Service Agencies

Day care, in-home services, social programs, career assistance and other supports vary greatly from state to state.  Do your research well in advance to understand what awaits you.

Medicaid Waivers

While Medicaid eligibility is based on federal law, the eligibility standards, services, and support available through Medicaid waivers vary dramatically between states. These services include case management, residential services, employment services, and other non-residential services. An important consideration is that many states have years-long waiting lists for services, and new residents must reapply and go to the end of the line.

Housing

  • Home Ownership– Accessibility features may be high on your list, and it could be necessary to make alterations to your new residence. Architects or housing planners may be willing to view properties on your behalf and to advise on costs, which can differ sharply from state to state.
  • Section 8 vouchers – This is a national rent subsidy program, so if you already have a voucher, it will be recognized anywhere in the U.S. However, you will be responsible for letting your current Public Housing Authority know that you wish to move, working with the Public Housing Authority in your new area to locate your own housing, and terminating your current lease in accordance with its terms. “Portability” in Section 8 housing is very complicated and there are many pitfalls. See: https://portal.hud.gov/hudportal/documents/huddoc?id=DOC_35623.pdf

Special Needs Trusts (SNTs)

Have any special needs trusts (SNTs) checked by a special needs attorney in your new home state as soon as possible, since it may be necessary to have technical corrections/amendments made.

ABLE Savings Accounts

At this writing, 46 out of 51 states have enacted ABLE Act legislation, and many states are beginning to launch their ABLE programs. The original ABLE account legislation required the creation of the ABLE account in the individual’s state of residence. The December 15, 2015, amendment of the Able Act, as part of the Tax Extenders Package, removed the residency requirement. If the individual moves to a new state, the move will not affect the validity of the existing ABLE account. When moving, it is important to remember that each individual may only have one ABLE account. While you do not have to open a new account in the new state, if you decide to have a local account, be sure to follow all procedures to transfer the account so that there is only one account in existence.

Disability Parking Permits

To avoid delays in obtaining a disability-parking permit, try to register cars and vans ahead of time by having a family member relocate early. You’d be surprised how long this can take in some states.

The regulations and paperwork involved in crossing state lines can be dizzying. Delays and omissions can have serious repercussions for your loved one’s quality of life. Unfortunately, there’s no way to make this process easy, but if you begin planning early, you can lower your family’s stress level.

Think about keeping a binder with important documents that you update each year.  Another option is scanning and filing documents online in a “cloud” account, which will save you from combing through boxes upon arrival in your new home.

The Special Needs Alliance (SNA) is a national non-profit comprised of attorneys who assist individuals with special needs, their families, and the professionals who serve them. SNA is partnering with The Arc to provide educational resources, build public awareness, and advocate for policies on behalf of people with intellectual/developmental disabilities and their families.

 

 

 

 

 

 

Roll the Vote

I am an individual with a disability, diverse needs, and I am also civically engaged and politically active. I’ve discovered that it is nearly impossible for me to shy away from my civic duties and the issues that affect me the most. You can thank former First Lady Barbara Bush for this, as one of the most defining civic moments was when I was eight, and I gave her a tour of the residential care facility in which I lived at the time. When she asked me, “What do you want to be when you grow up?” My response was, “I want to be the first female President of the United States, but I don’t know. I have this wheelchair thing.” Mrs. Bush reminded me that one of our great presidents, FDR, also had a wheelchair thing. She also said that the MOST important thing I could do was register to vote when I turned 18.

This event inspired me to learn as much as I could about the political process and the various levels of governance. On my 18th birthday, I decided to follow the advice of Mrs. Bush and I registered to vote. It is the best decision I’ve made in my life. Ever.

Registering to vote was an uncomplicated process for me. Being informed on the issues and candidates: that was a little more challenging. I don’t speak political acronyms or legalese. Finding people who could explain things to me in an understandable manner, without treating me as intellectually inferior, was dang near impossible.

I heard a saying once that goes like this: “What’s the best way to eat an elephant? One bite at a time, of course.” I promised myself that I would approach political involvement and voting the same. Even today, I take one bite at a time, and one step at a time. I spend months reading and researching issues, ballot initiatives, and candidates so I am comfortable and confident in my decisions.

I continued to pay attention to major milestones in the disability community. In 1990 the ADA was signed into law, the same day I left the residential care facility where I had met Mrs. Bush.  I spent the rest of my formative years in a small town (400-ish people) in a very rural state. South Dakota has an approximate total population of 800,000. With numbers that small, I realized that every vote is very important; it all matters.

I continued to play an active part in civics and in 2002 I was very thankful for the passage of the Help America Vote Act. This act provided information, resources and technologies which have made the voting process much easier for me. However, improved access and information does not automatically eliminate ignorance. That’s what humor is for.

In the 2014 US Senate election for South Dakota, I was happy to vote for former governor M. Mike Rounds. I had spent months volunteering for his campaign. I was anxious-nervous, anxious-excited (like a kid at Christmas) as Election Day dawned. I went to vote.

This was the first time I was ever voting in a community that was not my hometown, and in a midsized city in South Dakota. The poll watcher, who was rather elderly, asked to see my driver’s license. No problem. She asked me to sign the register. Then, she stopped herself, “Honey, can you write your name?” “What?” “Do you know how to write?” Uh, yeah. The woman behind me in line, whom I’ve known for years, goes “Kati can not only write her name, she can spell it, too.” “What?” “I’ll have you know the woman you are speaking about is college educated, and intelligent.” “Oh. Sorry.” I signed in, went to vote and didn’t think any more about the issue.   The uninformed woman, was effusively apologetic. “I just didn’t know they let your kind vote.” “Really, what kind is that…humankind?” Well, no, uh…

Subsequently, I’ve seen the poll-watcher at various events in the community. I feel like I should write her a thank you note. I genuinely appreciate her. She is a constant reminder for me that while we, as the Disability Community, have come a long way, we still have much work to do to be seen and valued as equals. It is people like this woman who continuously emphasize just how important my vote is, and why it is vital that I show up to the poll.

In the 1990s, there was a movement called ROCK THE VOTE, to register and politically engage young people. With the upcoming presidential election, the time has come to ROLL THE VOTE, to register and politically engage people with diverse needs and disabilities.


Kati is a small town, South Dakota woman who rolls through life. She is simply trying her best to positively change the world. The former governor for whom she voted is now United States Senator Mike Rounds (R-SD), and it is Kati’s pleasure to work for him as an administrative assistant and researcher in one of his regional offices.