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The Arc Celebrates Release of Richard Lapointe on Bond, Urges Prosecutors to Drop Case

/in , /by The Arc

Washington, DC – The Arc is thrilled to see the release today of Richard Lapointe, who has been in prison since 1987 for a rape and murder he did not commit. After a lengthy, coercive interview with the police, Lapointe falsely confessed to the crime, which was committed against his then-wife’s grandmother. Since then, his legal team and advocates have been fighting for his case to be reconsidered, because of his intellectual disability.

Last week, the Connecticut state Supreme Court raised concerns about the circumstances of the interrogation and the truthfulness of the alleged confessions, and ordered that he be released or given a new trial. Then this week, prosecutors agreed not to pursue the means to keep him in prison while they decide whether to challenge the state Supreme Court decision.

“This nightmare has gone on far too long for Richard. Finally, the state Supreme Court has recognized how the police treated Richard, and for the first time in more than 27 years, he will step outside of prison a free man. The prosecutors should now take the next and final step to end this and dismiss the charges, once and for all,” said Peter Berns, CEO of The Arc, who attended the oral argument of the case when it was heard by the Connecticut Supreme Court.

The Arc runs the National Center on Criminal Justice and Disability (NCCJD), the first national effort of its kind to bring together both victim and suspect/offender issues involving people with intellectual and developmental disabilities (IDD) under one roof. NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for criminal justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with IDD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.

“Far too many Richards are living in prisons, without the level of support Richard had from advocates and his attorneys – and it took more than 27 years for this injustice to be uncovered. How many more Richards are out there? False imprisonment of anyone, including people with IDD, is an ugly mark on our nation’s conscience. The National Center on Criminal Justice and Disability is working every day to ensure justice for people with intellectual and developmental disabilities,” said Berns.

Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Since 1983, over 60 people with intellectual disabilities have been executed based on false confessions. Robert Perske, respected author, advocate and long-time supporter of The Arc, compiled a list of people with intellectual disabilities who gave false confessions to begin documenting these otherwise hidden-away cases. Lapointe is on Perske’s list.

“It’s been a tough road – all the things Richard had to go through to get to this point are unfathomable. I’m feeling very good about all the troops that have stood by Richard all these years. Richard’s situation needs to teach everyone in the system,” said Perske.

“This is an extraordinary day. Richard never gave up hope and neither did his supporters. The truest form of justice is being served today!” Leslie Simoes, Executive Director, The Arc of Connecticut.

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Step Into Good Foot Health

/in /by The Arc
Feet

Image via Care_SMC, used under a Creative Commons license

Through The Arc’s HealthMeet project, which provides free health assessments to individuals with IDD in 5 pilot states, we have unveiled some common health concerns affecting this population, one of these issues being poor foot health. Foot care is important because for most people, our feet are how we get around throughout the day. Discomfort in the feet can cause mobility issues and lead to an increased risk of falling.

Each foot contains 26 bones, 33 joints, and about 100 tendons, muscles, and ligaments. Keeping your feet strong and healthy will help to reduce pain and discomfort. Individuals with intellectual and developmental disabilities (IDD) can be at a higher risk for having foot pain due to bone or muscle deformities, or lack of access to adequate medical care.

Other factors that can contribute to foot pain are obesity and diabetes – both of which individuals with IDD have higher rates of than the general population. Our feet carry all of our body weight on them wherever we go, so individuals that are overweight are constantly putting more pressure and stress on their feet, which over time can cause muscles, tendons, and ligaments in the foot to stretch out and break down. Obesity can also lead to type 2 diabetes. Individuals that have diabetes are recommended to have an annual foot exam by a doctor or podiatrist due to the many complications that can come from having “diabetic foot”. Over time, diabetes can cause nerve and blood vessel damage resulting in less feeling or numbness and less blood circulation to your feet. A person may not be able to feel when they cut their foot or if something is rubbing against their foot causing open sores. These sores and cuts can then go unnoticed for days. With the lack of blood circulating to the foot due to damaged blood vessels, the healing process is slowed down, letting infections develop. Even if an individual is not able to use their legs or feet, they still need to be checked to ensure they are healthy and free of infections.

Some individuals with IDD that are less verbal may not be able to express the pain that they are feeling in their feet or think the constant pain is normal. This distress could result in moodiness and lack of desire to be physical active. Communication between individuals with IDD and their caretakers and physicians is essential to maintaining good foot health.

Below are some things you can do to make sure that proper foot care is occurring to prevent foot pain and infections:

  1. Maintain a healthy weight – excessive weight leads to more pressure that can cause foot/heel pain or arthritis
  2. Wear shoes with good supports – for extreme cases of flat feet, etc. orthotics that are made to fit an individual’s specific foot may be needed
  3. Wash feet every day with warm water and in between toes
  4. Inspect feet every day for sores, cuts, and blisters and make sure to clean out properly
  5. Trim toenails – make sure not to trim too short which could lead to ingrown toenails
  6. Don’t go barefoot in areas where there can be sharp objects or rocks that can cut the bottom of your feet
  7. Use sunscreen on your feet– the skin on the top/bottom of your feet can be especially sensitive to sun exposure and overlooked when applying sunscreen
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How Oprah’s Story and Show Helped One Sexual Abuse Survivor With Down Syndrome Beat the Odds

/in /by The Arc

It started with one jarring phone call: “Conny, it’s Tammy. I think Jenny has been molested.” The grave tone of my sister Tammy’s voice told me that there was no doubt it was true.

How could anyone have hurt our precious, precious sister? Our sister, Jenny, has Down syndrome and an accompanying intellectual disability. Jenny is a person who would not hurt a fly, whose kindness and sensitivity are legend in the family; a person who could not stay in a room with a crying baby because it so upset her that she started crying too. A person with empathetic response to the world around her and a limited understanding of the evils of human nature, and a person whose disability influences her trusting nature.

My sister, Tammy, was home from college and doing what she always did when home, enjoying hang time with her big sister Jen. This often meant watching some of Jen’s favorite TV shows. Jen has a set schedule of shows she loves to watch so much that you look forward to the treat of watching them with her. Jenny’s usual routine is to return home from her supported day work program (currently she works as a candy striper at a hospital) and watch TV. On this particular day, like legions of other Americans, it was the Oprah Winfrey Show.

Tammy and Jen were about to catch one of Oprah’s most talked about shows. It ran on April 26, 2002, and was called “The Secret World of Child Molestation.” Oprah, a victim of child molestation herself, had a record of discussing the issue—even back when it was still largely taboo to discuss such matters in public. Even by 2002, when the topic had become more commonly discussed, this show still caused a stir because it presented a “deep dive” portrait on how often molesters are known and trusted members of your own family or community. The episode aired roughly concurrent to the still unfolding horror of the Catholic Church’s child molestation scandal in which known child abusing priests were left in parishes or moved from parish to parish, leaving epic numbers of devastated children in their wake.

Tammy found the show unsettling but was shaken to the core when Jen almost casually commented after then show, “Well that happened to me. But I’m over it now.” . . .

If you or someone you know is experiencing abuse or victimization:

  • Report to your local authorities or call The National Sexual Assault Hotline at 1-800-656-HOPE. Often, people with communication limitations will need support when calling the hotline.
  • Once any emergency situations have been handled, contact The Arc’s National Center on Criminal Justice and Disability (NCCJD) for more information about this issue, assistance when pressing charges, and to learn how you as a crime victims can “beat the odds” in your journey from crime victim to survivor. Submit a request online.
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Autism Acceptance: Accept Me, Not A Label

/in /by Guest Blogger

By Amy Goodman, M.A.

Autism is not something to be feared, nor is it solely defined by medical jargon or categories. It needs to be accepted as the way an individual thinks, feels, and expresses themselves; nothing more, nothing less. An individual who happens to have a diagnosis needs to be accepted as a human being first and foremost. The expression of their autism may come in many forms and whatever that may look like, it needs to be accepted as part of the person and part of what motivates them.

If we start by accepting autism as part of the person and not let their autism be what defines them, then we can be free to be who we want to be. I have taken on the challenge and embraced my autism. I do not let it run my life; therefore, I have broken some barriers and set an example that individuals on the autism spectrum can be accepted for who they are and what they can contribute to society. Let’s celebrate not only acceptance but that autism is not a disability but differently abled. Think positive and find unique solutions to problems, always remember this; there is more than one way to do things and no one correct way to do something. By accepting autism, individuals are embracing and empowering themselves to be who they always knew they would be.

Ever since my diagnosis, in my mid 30s, I have learned so much about myself and how it is possible to influence others just by being there and listening. Sharing my story has made such a difference in my life and now I have a new found talent that I would like to tell others about. As part of my job as Director of Autism Now, I was a contributor for Talent Scout, our toolkit for employers, that reflects the opinions and voices of people on the spectrum. I will also be available to do consulting services as well. That will include such things as being a public speaker at conferences, giving presentations, being a leader in the autism community, as well as telephone or e-mail consultations.

Acceptance is what it’s all about: accepting someone for who they are, for the difference they can make in someone’s life, and accepting them as a human being first. Always a person first and never a label or diagnosis; don’t fix what isn’t broken, let the person with autism tell you what they need and want, and always let them make their own choices for themselves. That’s what it means to accept autism, being free and being me.

Amy Goodman is the Director of Autism Now at The Arc of the United States. She has an undergraduate degree in Early Childhood Education and a Master’s degree in Special Education with a minor in autism. She is an individual on the autism spectrum who enjoys helping others to understand what it is like to live with a developmental disability and has a passion for helping others in their journeys with their children with unique abilities to live life to the fullest as independently as possible. She likes to be a self-advocate and fight for the rights of individuals with intellectual and developmental disabilities as time permits. She also has a passion for reading, crossword puzzles, square dancing, and parrots and owls.

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House and Senate 2016 Budget Resolutions Are an Affront to the Disability Community

/in /by The Arc

The Senate passed its Fiscal Year (FY) 2016 Budget Resolution early this morning, following the House’s approval of its own resolution earlier this week. Budget resolutions set the boundaries for federal spending and tax priorities for the fiscal year and the implications are very scary for people with intellectual and developmental disabilities (IDD) and their families this year.

The House resolution seeks to balance the budget within nine years by cutting $5.5 trillion, while the Senate resolution would balance it in ten years by cutting $5.1 trillion, reflecting differences that could well be resolved in a conference committee. Substantial portions of these cuts come from block granting the Medicaid program (called “flexible state allotments”) and privatizing the Medicare program. Should a conference agreement pass in both chambers, a process known as budget reconciliation could be triggered to make the proposed changes in the entitlement programs and the tax code alike. This process would likely unravel the social insurance and safety net for our nation’s most vulnerable citizens while simultaneously reducing taxes for those who least need it.

“Bake sales and car washes are simply not an option. Our social insurance and safety net programs require appropriate levels of funding that can only come from the taxes that we pay and from a bipartisan commitment to people with disabilities,” stated Peter V. Berns, CEO of The Arc. “Most Americans support a balanced approach to deficit reduction, and disability is a bipartisan issue. But the budgets approved in Congress don’t reflect that reality with a ‘cuts only’ approach. Creating even larger wealth inequality in this country through the spending and tax policies promoted in these budgets is an affront to people with IDD, many of whom are already at the bottom rung of the economic ladder. Our government policies should be lifting people up, not pushing them further down.”

To get involved in protecting the rights of people with IDD, sign up for The Arc’s Action List.

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Planning for the Future: How Does the First Party Special Needs Trust Fit in the Plan?

/in /by The Arc

Third in a Three-Part Series

By Laurie Hanson, Esq., Special Needs Alliance

There are an estimated 600,000-700,000 adults with intellectual and developmental disabilities (IDD) in the United States who are living with aging family members and with no plan in place for their future. Below, our colleagues from the Special Needs Alliance emphasize the importance of planning and trusts.

With the launch of the Center for Future Planning, The Arc is shining a spotlight on the need to encourage and support families to create person-centered future plans. The Center provides practical assistance and resources on future planning items such as assisting the individual with daily and major life decision-making; housing and residential options and supports; financial planning; special needs trusts; and employment and other daily activities.

In the first installment of our series, we discussed the importance of planning for a person living with a disability. In our second installment, we discussed how the third party special needs trust (SNT) is currently the best tool for parents to provide for a person with a disability at the parents’ death. We defined basic trust terms, the importance of choosing a trustee wisely, how much money should be placed into the trust, and more. In this third installment, we will be discussing the first party SNT.

What is an SNT? A trust is a legal arrangement by which a person or financial institution, called the “trustee,” holds legal title and manages money for the benefit of a person called the “beneficiary.” An SNT, if established and administered correctly, allows a person with a disability to place his or her own money in the trust and remain eligible for Supplemental Security Income (SSI) benefits and/or Medicaid. This only works if the SNT:

  • is established by a parent, grandparent, guardian, or court
    • for the benefit of a person who is living with a disability as defined by the Social Security Administration;
    • for a person who is under age 65;
    • using assets belonging to the person with a disability; and
  • is irrevocable; and
  • has a provision stating that at the death of the beneficiary, any remaining trust assets must be distributed first to the state as repayment for any Medicaid received by the beneficiary.

When is an SNT used? Individuals living with disabilities who depend on SSI and/or Medicaid to meet basic needs may have only limited assets – for instance, in most states, a person on SSI and Medicaid may have only $2,000 in cash and other “countable assets”. If a person inherits money or receives money from a lawsuit, he or she will no longer be eligible until the assets are reduced to the eligibility standard (e.g., $2,000 for the SSI program.). The SSI and Medicaid programs treat an inheritance or personal injury settlement as income in the month of receipt and an asset thereafter. Thus, upon receipt of the inheritance, the individual must either go off the program or reduce assets by the month after the month of receipt in order to remain eligible. To reduce assets without affecting eligibility, the individual may:

  • purchase assets that are not counted toward the $2,000 eligibility standard, such as a home, household goods, personal items like a computer or bicycle, an automobile, or a burial plot; and/or
  • prepay funeral expenses in a way that qualifies for an MA and/or SSI exclusion; and/or
  • fund an ABLE account if the disability was diagnosed before age 26 and the amount to be reduced is $14,000 or less – when ABLE accounts become available in his/her state of residence; and/or
  • place the assets in a special needs trust; and/or
  • place the assets in a special needs pooled trust sub-account.

Here are some examples:

Beth Jensen is a young adult living with a developmental disability who has a guardian. She lives in a group home and her support services are paid by a Medicaid waiver. She also receives SSI. Her father died without doing any planning (see installments 1 and 2!) and so she is about to inherit $300,000. Beth qualifies to be a beneficiary of an SNT because she is under age 65 and she has a disability according to SSA criteria, as evidenced by her receipt of SSI. The trust can be established by her guardian, and the inherited money can be transferred to the trust. She will remain eligible for SSI and MA as long as the trustee distributes the funds for Beth’s sole benefit. Any money left in the SNT at her death will be paid back to the state up to the amount of Medicaid benefits paid on Beth’s behalf.

Beth’s guardian could also establish a special needs pooled trust sub-account for Beth’s benefit. A pooled SNT is a master trust established by a non-profit corporation to hold assets for the benefit of a person with a disability. Here is a link to pooled trusts run by, or affiliated with, chapters of The Arc. The funds are pooled for investment purposes, but a sub-account is maintained for each beneficiary. A sub-account can be established by the individual with the disability, a parent, grandparent, guardian, or court. The trustee makes distributions from Beth’s sub-account for her sole benefit. At Beth’s death, a portion of the remaining assets may be retained by the pooled trust for trust administration purposes or to support other people with disabilities. Beyond what remains with the pooled trust, remaining assets are to be paid back to the state to reimburse the state for Medicaid benefits paid on Beth’s behalf. If any funds remain after payment to the state, funds may be paid to a remainder beneficiary named when the account was established. . Just how much money the pooled trust retains, and how much must be paid to the government, varies from state to state.

What can the trustee buy for the beneficiary with trust money? Guidelines are broad and, in general, the trustee may pay for goods and services that enhance the beneficiary’s quality of life. Examples of valid expenditures include extra therapy or personal assistance services, books, consumer electronics, musical instruments, travel and education, recreation and entertainment, pets, and some home maintenance, such as gardening and snow removal. In most cases, the trustee cannot give the beneficiary cash. If the beneficiary is on SSI, payment for food and/or shelter will reduce the beneficiary’s income by up to one third. Ensuring that the distributions do not jeopardize the beneficiary’s benefits is an important part of the trustee’s job.

SNTs can be complicated and state Medicaid agency requirements vary, so families should work with professionals who are experienced with the nuances of changing government regulations. The SNT can be a wonderful tool for those who rely on public benefits for basic needs to enhance their quality of life.

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. This article does not constitute legal advice, and individuals should consult legal counsel concerning their specific situations.

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Preventing Falls for People With Intellectual Disability

/in /by The Arc

Falls can cause injuries that make it hard to live as independently as possible. Equally important, many people who fall once develop a fear of falling. This fear may cause them to be inactive, which only increases risk of falling in the future.

According to findings from over 1,400 adults with ID, 18 percent* fell at home in the past year. While many consider falling an issue only for older adults (ages 65 or older), of whom 33 percent report falling each year, these findings came from respondents ages 14 or older. This implies that people with ID of all ages may be more likely to fall and may need more help to avoid falls at home.

Luckily, falling is preventable.

There are many steps that people with ID, family, friends, and staff can take to decrease the chance of falling.

  1. Exercise, exercise, exercise – Doing exercises that improve leg strength and balance are especially beneficial for reducing rates of falls. Tai Chi programs are especially helpful. The National Center on Health, Physical Activity and Disability (NCHPAD) and Disabled Sports USA offers examples of Tai Chi movements for people with disabilities.
  1. Review medications with doctors/pharmacists – Medicines may be causing side effects like dizziness or drowsiness that may cause people to fall.
  1. Visit the eye doctor – Having eyes checked and a prescription updated once a year can help ensure that a person sees any potential falling hazard in his/her way.
  1. Make the home and The Arc safer – Adding grab bars inside/outside a tub or shower and next to a toilet, adding railings on both sides of the stairways or improving lighting in a home or building can lessen the risk of falls.
  1. Connect with falls prevention programs – One great resource center is the National Falls Prevention Resource Center, which provides falls prevention materials for families and professionals. This Center also supports grantees addressing falls prevention issues in local communities. Any chapter of The Arc interested in falls prevention for people with ID is encouraged to connect with these grantees to find out more on how to work together to prevent falls in local communities!

*These findings come from The Arc’s HealthMeet project.

HealthMeet aims to reduce health disparities experienced by people with intellectual or developmental disabilities (IDD) so they can live a longer and healthier life. Through free health assessments and training, HealthMeet helps people with IDD learn about their health needs. HealthMeet also offers training to improve public, health professional, and caregiver awareness of health issues faced by people with IDD. HealthMeet is supported through at $1 million cooperative agreement with the Centers for Disease Control and Prevention. For more information on the HealthMeet project, contact Jennifer Sladen at sladen@thearc.org.

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When We Move Forward Together, Anything Can Happen

/in /by Guest Blogger

This is a guest blog post by Mardra Sikora.

A few years ago, my son and I sat backstage during the Broadway Across America national tour performance of Mary Poppins. The cast sang, “Anything Can Happen, if You Let it,” and danced across the stage exuberantly pursuing their point. I believed them, because Marcus would soon be on stage singing right alongside them. This was in 2011 and the opportunity came from an auctioned event. Since then, his ambition to write his own musical and perform on stage has continued to grow. In fact after telling one actor at a community theater that he wanted to play the leading role, that actor reminded Marcus of the quote, “The greatest of journeys starts with a single step.”

The Next Step

MarcusMarcus keeps taking steps. His latest endeavors have netted a short play which is being produced this month at a local public high school. The show is called “Cassie Through the Closet Door.” The role of Cassie was inspired by an actress who Marcus worked with while participating in a project called the Art of Imagination. A program developed by our local chapter of The Arc, the Ollie Webb Center. Marcus has taken beginning acting classes through this program and hopes to move on to advance acting and then classes within the community next. These classes teach craft and understanding theater, but his innate talent is as a storyteller. Coming up next is the release of his children’s book entitled Black Day: The monster rock band, with a read along animated short to follow on DVD this fall.

Dreams Take a Village

There are still some who can’t believe what Marcus can achieve, but frankly Marcus doesn’t care what they think. That is perhaps one key to his continued ambition and potential for success. But it’s more than that, it’s also a community, a team effort. Ask any Olympian if they did it alone. There’s a reason award acceptance speeches are so long, the list of “Thank You’s” include many supporters within their community. Many people have to come together to teach, support, encourage, and enable anyone to reach their dreams.

Menschen cardMarcus also has some great role models breaking the social barriers. Connor Long, is one example of a young adult self-advocate who is following his acting aspirations. He’s already received accolades and awards for his role in the live action short Menschen. Which The Arc is sponsoring shows in cities across the country. The most recent list is at the end of this review, check back for updates. (Be sure to talk to your local arc to bring the show to your town.) Connor is busy with local theater at events and is also in production of his next film project, Learning to Drive, another example of a writer-director with a personal story to tell.

These two young men are just the tip of the iceberg, there are so many self-advocates taking steps to achieve their dreams. With their actions they are teaching communities, and because our communities are growing more inclusive, they continue to move forward. Let us all keep moving forward together, sharing, teaching, and learning that together, “Anything Can Happen, if You Let it!”

Bio: Mardra Sikora believes in the power of words and uses both fiction and non-fiction to advocate for and with her adult son Marcus. You can find her and Marcus on the blog Grown Ups and Downs, Facebook and Twitter as well as on various blog networks including The Huffington Post.

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The Arc Joins Over 70 National Organizations to Speak Out Against Attacks on Social Security, SSDI

/in /by The Arc

Social Security and its disability program are incredibly important to people with IDD, providing modest support to make living independently a reality.  But this vital system is under attack in Washington, DC. Today, The Arc joined other major national organizations to release a letter with Senator Sherrod Brown (below) to oppose any cuts to the program.  Sign up for The Arc’s action center to stay informed and act to stop Congress from making cuts.

March 17, 2015

The Honorable Orrin Hatch

Chair, Committee on Finance

U.S. Senate

219 Dirksen Senate Office Building

Washington, DC 20510

 

The Honorable Sam Johnson

Chair, Subcommittee on Social Security

Committee on Ways and Means

U.S. House of Representatives

B317 Rayburn House Office Building

Washington, DC 20515

 

The Honorable Paul Ryan

Chair, Committee on Ways and Means

U.S. House of Representatives

1102 Longworth House Office Building

Washington, DC 20515

 The Honorable Jeff Flake

U.S. Senate

368 Russell Senate Office Building

Washington, DC 20510

 

The Honorable Joe Manchin

U.S. Senate

306 Hart Senate Office Building
Washington, DC 20510

 

RE:      Opposition to proposals to eliminate or reduce concurrent Social Security Disability Insurance (SSDI) and Unemployment Insurance (UI) benefits

Dear Chairman Hatch, Chairman Johnson, Chairman Ryan, Senator Flake, and Senator Manchin:

The undersigned members of the Consortium for Citizens with Disabilities (CCD), the Coalition on Human Needs, and the Strengthen Social Security Coalition write to express our opposition to proposals to eliminate or reduce concurrent Social Security Disability Insurance (SSDI) and Unemployment Insurance (UI) benefits, including the “Social Security Disability Insurance and Unemployment Benefits Double Dip Elimination Act of 2015” (S. 499; H.R. 918) and the “Reducing Overlapping Payments Act of 2015” (S. 343).

SSDI and UI are vital insurance systems established for different purposes. Receiving UI and SSDI concurrently is legal and appropriate. This has been the long-standing position of the Social Security Administration and of the courts. Individuals qualify for SSDI because they have significant disabilities that prevent work at or above Social Security’s Substantial Gainful Activity level (earnings of $1,090 per month, in 2015). At the same time, the Social Security Act encourages SSDI beneficiaries to attempt to work, and those who have done so at a low level of earnings but have lost their job through no fault of their own may qualify for UI. As highlighted in a 2012 Government Accountability Office report, less than one percent of individuals served by SSDI and UI receive concurrent benefits, and the average quarterly concurrent benefit in fiscal year 2010 totaled only about $3,300 (or an average of $1,100 per month).

These extremely modest benefits can be a lifeline to workers with disabilities who receive them, and their families – and as permitted by law are neither “double-dipping” nor improper payments. We are deeply concerned by any prospect of worsening the economic security of workers with disabilities and their families.

In addition, proposed cuts to concurrent benefits single out SSDI beneficiaries with disabilities, treating them differently from other workers under the UI program.

Finally, proposed cuts to concurrent benefits create new disincentives to work for SSDI beneficiaries, by penalizing individuals who qualify for both SSDI and UI because they have attempted to work, as encouraged by law. The creation of a new work disincentive runs directly counter to our shared goal of expanding employment opportunities for people with disabilities.

For these reasons, the undersigned national organizations strongly oppose the “Social Security Disability Insurance and Unemployment Benefits Double Dip Elimination Act of 2015” and the “Reducing Overlapping Payments Act of 2015.” We urge Congress to reject these bills and any similar legislation.

Sincerely,

9to5

ACCSES*

AFL-CIO

Alliance for Retired Americans

Alliance for Strong Families and Communities

American Council of the Blind*

American Federation of Government Employees (AFGE)

American Federation of State, County and Municipal Employees (AFSME)

American Foundation for the Blind (AFB)*

Americans for Democratic Action (ADA)

Association of Assistive Technology Act Programs*

Association of University Centers on Disabilities*

Autism National Committee*

Autistic Self Advocacy Network (ASAN)*

B’nai B’rith International

Brain Injury Association of America*

Campaign for America’s Future

Center for Community Change Action

Center for Effective Government

Coalition on Human Needs

Community Legal Services*

Disability Rights Education and Defense Fund*

Easter Seals*

Equal Rights Advocates

Every Child Matters Education Fund

Food Research & Action Center (FRAC)

Goodwill Industries International*

Health & Disability Advocates*

Justice in Aging*

Latinos for a Secure Retirement

Lupus Foundation of America*

Lutheran Services in America Disability Network*

MomsRising

NAACP

National Advocacy Center of the Sisters of the Good Shepherd

National Alliance on Mental Illness*

National Association of Councils on Developmental Disabilities*

National Association of Disability Representatives*

National Association of State Directors of Special Education*

National Association of State Head Injury Administrators*

National Committee to Preserve Social Security and Medicare*

National Council of Jewish Women

National Council on Aging*

National Council on Independent Living*

National Disability Rights Network (NDRN)*

National Down Syndrome Congress*

National Employment Law Project

National Employment Lawyers Association

National Industries for the Blind*

National Multiple Sclerosis Society*

National Organization for Women

National Organization of Social Security Claimants’ Representatives*

National Priorities Project

National Respite Coalition*

National Women’s Law Center

NETWORK, A National Catholic Social Justice Lobby

OWL-The Voice of Women 40+

Paralyzed Veterans of America*

Provincial Council of the Clerics of St. Viator (Viatorians)

Racial and Ethnic Health Disparities Coalition

Social Security Works

SourceAmerica*

Special Needs Alliance*

Strengthen Social Security Coalition

The Arc of the United States*

The Jewish Federations of North America*

The John O’Leary Organization

The Judge David L. Bazelon Center for Mental Health Law*

Union for Reform Judaism

United Cerebral Palsy*

United Spinal Association*

United Steelworkers (USW)

USAction

Vietnam Veterans of America (VVA)*

World Institute on Disability*

 

CC:

 

Original cosponsors, S. 499

The Honorable Daniel Coats

The Honorable James M. Inhofe

The Honorable James Lankford

The Honorable Tim Scott

 

Original cosponsors, H.R. 918

The Honorable Todd C. Young

The Honorable Mike Kelly

The Honorable Patrick J. Tiberi

The Honorable Diane Black

The Honorable David G. Reichert

The Honorable Charles W. Boustany, Jr.

The Honorable Adrian Smith

The Honorable James B. Renacci

The Honorable Tom Reed

The Honorable Aaron Schock

 

Members, U.S. Senate

Members, U.S. House of Representatives

 

* Members of the Consortium for Citizens with Disabilities (CCD).

 

The CCD is a coalition of national organizations working together to advocate for federal public policy that ensures the self-determination, independence, empowerment, integration, and inclusion of the approximately 57 million children and adults with disabilities in all aspects of society.

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Calling It Modern Doesn’t Make It Good: No “Modern Asylum” Will Benefit This Generation of People With Disabilities

/in /by The Arc

Recently, Dr. Christine Montross made what The Arc believes to be a deeply flawed argument in favor of institutionalization for individuals with intellectual and developmental disabilities (IDD), or as she put it, “a modern asylum”. Dr. Montross failed to address a number of key factors in her piece, but what was most disturbing was the complete lack of reference to the desires of individuals with IDD.

When The Arc was founded, nearly 65 years ago, it was all too common for doctors to tell parents that the best place for their child with IDD was in an institution. Emboldened by their collective desire to raise their children as part of their families and communities, and their refusal to accept institutionalization as the only option, The Arc’s founders fought for inclusion. To this day, The Arc stands by the belief that all people, regardless of disability, deserve the opportunity for a full life in their community where they can live, learn, work and play through all stages of life.

The vast body of research on deinstitutionalization has established that moving from institutional settings and into smaller community-based ones leads to better outcomes for people with IDD (Kim, Larson, & Lakin, 1999; Larson & Lakin, 1989, 2012). In fact, studies continue to show that people with IDD benefit from moving to the community from an institutional setting. More powerful than any of the research are the stories from individuals who transitioned from institutions into the community. These stories breathe life into this research and The Arc’s mission.

Dr. Montross’ op-ed offended many readers, but it did highlight a systemic issue. Many health care providers will not accept people with IDD as clients, or do not feel that they have the expertise to appropriately serve them. Furthermore, there are practitioners who will not accept clients who are reliant on Medicaid as their primary payer of health care services due to low reimbursement rates. Combined, these issues create a system that doesn’t always adequately serve all people with IDD.

Weaknesses in the ability of some community-based mental health treatment systems to adequately meet the needs of clients does not necessitate the return of people to archaic institutional settings. Instead, it should lead to a public outcry for vast and immediate improvements in the capacity of communities to provide mental/behavioral health care to those who need it. The Arc strongly believes that the solution is not to move back to antiquated institutions. The way forward does not, as Dr. Montross states, “[include] a return to psychiatric asylums.” The way forward includes serving all citizens and demands an evolution in the attitudes of health care practitioners which includes the belief that all people, regardless of disability, deserve the same opportunities to enjoy full lives in their communities.

While there is no denying the issues she references, as often as possible the choice of where to live must be made by the individuals who will be impacted. And, as history has shown, the approach suggested by Dr. Montross has been attempted in the past and it resulted in Willowbrook and countless other atrocities in the name of “patient care.” While community supports for individuals with IDD can benefit from improvement, we have come too far to take a step back towards segregated settings.

We welcome a discussion with Dr. Montross. Our hope is next time she has a national platform like the New York Times she chooses to consider the desires of individuals with IDD and the history of isolation and oppression they faced in institutions before making suggestions about what is best for them.