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Who Should Be the Trustee of a Special Needs Trust?

/in , /by The Arc

By Rebecca A. Hajosy, J.D., Special Needs Alliance

Providing long- term financial support or supplementation to a loved one with disabilities requires careful planning. One commonly used tool is the special needs trust (SNT), created to protect assets, while maintaining eligibility for means-tested government benefits. A critically important part of the trust process is selection of a trustee, who will make decisions regarding the investments, distributions and all other aspects of managing the trust for the benefit of an individual with disabilities.

Of course, the selected trustee should be honest, dependable and organized, but typically, someone is needed to play more than a purely administrative role. Parents should write a separate “letter of intent” to help guide the trustee in understanding how the SNT should enhance their son’s or daughter’s quality of life. It should describe the beneficiary’s goals, needs, routines, and preferences for current and future support. It should also include advice about interacting with, and advocating for, the individual. It’s usually a good idea to choose someone located nearby to facilitate the trustee’s active involvement.

Family members are often chosen for the trustee role, but before making a selection, the following should be factored in:

  • This is a long-term commitment, and the trustee should be willing and able to serve for years to come. If an older relative is being considered, it would be wise to also appoint a younger “successor” trustee so that the trust can be administered without interruption.
  • Government entitlement programs, such as Supplemental Security Income (SSI), Medicaid and HUD Housing, have detailed requirements regarding SNT distributions. The trustee must be familiar with the rules pertaining to the programs in which the beneficiary participates. A wrong move can disqualify them for benefits, result in overpayments or even expose the trustee to legal liability. In order to advocate for the benefits to which the beneficiary is entitled, the trustee must be knowledgeable concerning a wide range of often-changing laws and regulations.
  • The trustee has a fiduciary responsibility to manage the trust’s assets in the best interests of beneficiaries. The trustee should either have investing experience or hire someone who does, since improper handling could, again, lead to legal liability.
  • In some situations, having a family member serve as trustee could change─ and even damage –the individual’s relationship with the beneficiary.
  • Even when a family member serves as trustee, it’s common for them to be paid a fee, given the amount of work involved. Family members usually charge less, though, than corporate trustees, banks, accountants and lawyers.

Due to the complexity of administering an SNT, family members may prefer to act as co-trustees, alongside professionals. While appointing co-trustees has advantages, in most cases, they must agree on all actions to be undertaken, including the signing of checks. This can become burdensome, and even result in gridlock. If a family member acts as sole trustee, they may choose to regularly consult a special needs attorney or financial advisor to supplement their own skills.

Another way to involve family members is to name one or more of them as “trust protector.” In that capacity, while not managing the trust, they can require accountings and investigate actions. They also usually have the authority to remove and appoint trustees.

There’s a lot to consider when managing an SNT, and the degree to which it contributes to an individual’s well-being rests largely with the trustee. Choose carefully.

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.

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Impact of Poor Vision

/in /by The Arc

Vision is very important to maintaining the quality of an individual’s life. Individuals with intellectual disabilities (ID) are more at risk for having issues associated with vision than the general population. Research has shown that individuals with ID are less inclined to to go to routine physician visits for check-ups. The same applies for receiving their biennial eye check-up. Individuals who are at risk or have a history of poor vision in their family should go more frequently for check-ups. Some factors that can affect vision—putting an individual at risk—are: diabetes, high blood pressure, specific medications with side effects to vision, or previous injuries to the eye. Obesity, which often leads to diabetes and high blood pressure, is already a very prominent issue among individuals with ID, putting them in a potential at-risk category.

Individuals who are non-verbal might not to be able to express to their family or caregiver that their vision has changed and that they may now require corrective lenses, which is why it’s so important to continually get check-ups. Individuals may also be used to having poor eyesight and not know that their vision can be corrected to see clearer. So, it’s important to continually go back to the doctor for check-ups to ensure their vision is still accurate. Physicians should have adaptive eye charts that include pictures, shapes, or a rotating “E” (individuals can point to which side the opening is on the E) instead of letters if the individual is not literate or non-verbal.

Correcting poor vision will help individuals to be more independent. They might feel more comfortable going places or doing things on their own where they can now clearly see signs, directions, and other markers around them. It will also help with balance to have a clear view of the floor and things around them, and with depth perception to reduce falls. Being able to see others clearly could even improve their social skills by allowing them to identify people better and feel more comfortable being in social settings around others.

Ensure that individuals you care for receive an eye exam every two years. If glasses are required, there are organizations, such as the Lion Club, which help to recycle old prescription eyeglasses and give them out to those that can’t afford them. To learn more about the health of individuals with ID, check out The Arc’s HealthMeet project website.

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Happy 80th Birthday, Social Security!

/in /by The Arc

This week, The Arc celebrates the 80th anniversary of our nation’s Social Security system.

Signed into law by President Franklin Delano Roosevelt on August 14, 1935, Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities – when a worker retires, dies, or acquires a significant, qualifying disability. It helps people with disabilities who work to enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the health care they need.

Social Security insures nearly all Americans, or an estimated 165 million workers. Its protections are hard to come by anywhere else: roughly 7 in 10 civilian workers have no long-term disability insurance, half have no private pension, and one in three has no savings set aside for retirement.

It’s hard to imagine what life would be like without Social Security. Benefits average just over $40 per day, but lift about 22 million Americans out of poverty. For most beneficiaries, that $40 per day is most or all of what they have to get by. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

Social Security has never missed a payment since 1935. Workers pay for Social Security, and count on it being there when they and their families need it. The Arc knows how important it is to sustain Social Security’s record of success, and keep our nation’s promise to today’s workers and beneficiaries, and for generations to come.

Over the last year, The Arc has been on the front lines, defending our Social Security lifeline against shocking attacks and speaking out against harmful benefit cuts. We’re fighting to prevent a devastating 20% across-the-board cut in Social Security disability benefits at the end of 2016. And we offer many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital system is there for people with I/DD and their families!

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SSDI: Sustaining Our Lifeline for Decades to Come!

/in /by The Arc

As The Arc celebrates Social Security’s 80th anniversary this August, we kick off the month by marking the 59th anniversary of Social Security Disability Insurance (SSDI). Signed into law on August 1, 1956 by President Dwight D. Eisenhower, SSDI insures nearly all American workers and their families in the event of life-changing disabilities. Without SSDI, many families with members with significant disabilities – including people with intellectual and developmental disabilities (I/DD) – would face financial dire straits and often unthinkable choices.

Our Social Security system has withstood the test of time. But this bedrock of our nation’s economy requires periodic maintenance to remain strong.

Today, our SSDI lifeline stands at great risk. Here are three facts that people with I/DD, their families, and friends need to know about SSDI and the action that Congress must take:

1. Congress must act by the end of 2016 to prevent a 20% across-the-board cut in SSDI benefits.

Congress from time to time needs to adjust Social Security’s finances to account for population and economic shifts. The need to replenish the Social Security’s Disability Insurance (DI) fund in 2016 to account for long-term trends, such as an older workforce now in its disability-prone years, has been expected for several decades. Without Congressional action, at the end of 2016 the DI fund’s reserves will be depleted, leaving only incoming payroll contributions to pay for benefits. As a result, unless Congress acts, SSDI beneficiaries will face benefit cuts of 20% at the end of 2016.

2. Two ready, sensible solutions can prevent SSDI benefit cuts: merging Social Security’s trust funds, or ‘reallocation”.

Over the last 5 decades, Congress has repeatedly, on a bipartisan basis, used a simple, commonsense solution to address shortfalls in either of Social Security’s two funds (the Old-Age and Survivors Insurance or OASI fund, and the DI fund). A temporary shift to direct more Social Security revenues to the DI fund – called “reallocation” — will extend the solvency of the DI fund for almost two decades, through 2034. Congress has made similar shifts 11 times in the past, about equally increasing the percentage going into one fund or the other. Reallocation does not require any new taxes. Additionally, the solvency of the overall Social Security system stays the same, with the combined funds remaining fully solvent through 2034.

Another approach – proposed in the One Social Security Act (H.R. 3150) – would merge Social Security’s OASI and DI funds into a single Social Security Trust Fund. This would align Social Security’s finances with the program’s reality: an integrated system of retirement, life, and disability insurance paid for by a single payroll tax. It will eliminate needless crisis points, such as the pending 2016 depletion of the DI fund. And it will better enable Congress to consider the system as a whole to develop responsible ways to strengthen benefits and finances over the long-term, to ensure that Social Security will be there for generations to come.

3. Congress can secure SSDI’s finances while rejecting harmful approaches.

Unsurprisingly, Americans overwhelmingly support preserving and strengthening Social Security, and oppose benefit cuts. Fortunately, Congress can secure SSDI’s finances while rejecting approaches that would harm people with disabilities and their families.

  • Congress needs to reaffirm the Security in Social Security, and reject short term solutions to the shortfall. Artificial crisis points, such as the one currently faced by the DI fund, cause great alarm for beneficiaries and their families who are forced to live for years with the fear of major cuts to benefits that often mean the difference between financial security and extreme hardship. Short-term patches to the DI fund would force SSDI beneficiaries and their families to live in a perpetual state of fear and uncertainty.
  • Congress should reject any proposals that cut eligibility, benefits, or coverage. SSDI benefits average only about $40 per day, making up the majority of income for most beneficiaries and the only source of income for one in three beneficiaries. It’s hard to imagine how anyone could get by if these extremely modest benefits were cut.

As the end of 2016 grows near, Congress must hear from people with I/DD, their families, and friends that we want Congress to sustain our SSDI lifeline for decades to come.

Sign up for The Arc’s Action Alerts and Capitol Insider newsletter to stay up to date and take action. Your voice can make a difference!

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Happy Birthday to Two Essential Lifelines!

/in /by The Arc

Millions of Americans with disabilities appreciate the vital contributions of the Medicaid and Medicare programs. They provide access to health care and vital home and community based supports (HCBS). Needless to say, they are essential lifelines for people with disabilities.

As we mark the 50th Anniversary of these important programs we have much to celebrate. Did you know that today for the first time in its history, home and community-based services (HCBS) accounts for a majority of Medicaid long-term services and supports (LTSS) spending? This anniversary gives us the opportunity to celebrate the fact that millions of Americans with disabilities have access health care thanks to Medicare and Medicaid. That’s right, MILLIONS of people. Approximately 9 million low-income seniors and younger people with disabilities are covered by both Medicare and Medicaid, including. These dually eligible beneficiaries have complex and often costly health care needs and rely heavily on these program. The harsh reality is without these lifeline programs, their medical needs would not be met – that alone is a cause to celebrate these essential programs.

For people with intellectual and/or developmental disabilities (I/DD) Medicaid and Medicare are especially critical. Nationwide, state and federal Medicaid together provides over 77.7 percent of the funding for supports and services for people with I/DD. This effective and cost efficient program is essential for people with I/DD, enabling them to live and work in the community.

Medicaid has evolved over the years just as the needs of people with I/DD. We urge Congress and the states to ensure that it can meet the future health and LTSS needs of people with I/DD and other disabilities. Please join The Arc in wishing Medicare and Medicaid a Happy Birthday – cheers to another 50 years of essential supports for people with I/DD across the nation!

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From Small Towns to the White House, The Arc’s Interns’ Perspectives on Celebrating 25 Years of the ADA

/in , /by The Arc

By Taylor Woodard and Mike Nagel. July 26, 2015 will mark the 25th anniversary of an important, but too often overlooked, moment in civil rights history: the signing of the Americans with Disabilities Act (ADA). The Arc’s Paul Marchand public policy interns, Taylor Woodard from Junction, Texas, and Mike Nagel from Wyndmere, North Dakota, both of whom ventured into the nation’s capital determined to change disability policy, had front-row seats to the White House’s official ADA commemoration. Here is a description of that historical occasion though their eyes.

We were in awe as we were escorted through the halls of the epicenter of U.S. government by various members of the Armed Forces. Once at the celebration, we excitedly wandered through elegant corridors and ornate rooms, nibbled hors d’oeuvres, and mingled with disability community leaders and advocates as we waited for the President’s remarks. Photos and videos do not do justice to the elegance of this magnificent building.

After we had soaked in the scenery for a bit, we made our way to the East Room, where the main event was to be held. We were fortunate to snag front-row seats to hear President Obama’s address. From here, we could see so many prominent figures of the disability rights movement: former Senators Tom Harkin and Bob Dole, former Congressman Tony Coelho, as well as Representative Steny Hoyer, House Minority Whip. Finally, the big moment arrived: President Obama, followed by Vice President Joe Biden, stepped up to the podium and began.

With great passion, the President spoke of “tear[ing] down barriers externally, but…also…internally.” He continued, proclaiming “That’s our responsibility as Americans and it’s our responsibility as fellow human beings.” For young advocates like us, the President’s words certainly ring true: attitudes in society can be, and often are, barriers in and of themselves. And we, as well as all advocates, must remember these truths as we strive for a more inclusive tomorrow.

In closing, President Obama poignantly outlined the accomplishments of the past 25 years as well as laid a path for the future. For us, this future would include ending unnecessary restraint and seclusion, assuring a high-quality education for all, creating supports and services for people with I/DD to live and work in the community, and protecting rights to self-determination and quality of life.

As the crowd applauded, a very different cheer erupted several thousand miles away in two of the nation’s tiniest rural communities, as our proud parents watched their son and daughter shake the hand of the President, a moment we will never forget.

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The Arc Urges Congress to Protect Social Security Lifeline

/in /by The Arc

Washington, DC – The Arc released the following statement from Marty Ford, Senior Executive Officer, Public Policy, in response to several important developments in Washington affecting Social Security, including Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI):

“The Arc applauds the Senate, which yesterday listened to the voices of people with disabilities and seniors, and removed a harmful proposal from legislation to reauthorize our nation’s highways, bridges, and public transportation system. The proposal would have partially funded the bill with cuts to Social Security, SSDI, and SSI. Social Security must not become a piggybank to pay for unrelated programs, no matter how important, and beneficiaries cannot afford any cuts to these modest but vital benefits. The Arc will remain vigilant and ready to fight back if any similar proposals arise as Congress continues to debate reauthorization of surface transportation legislation.

“Earlier this week, the Social Security Trustees released their 2015 report on the current and projected financial status of our nation’s Social Security system. The Trustees continue to find that Social Security’s overall health is strong, but that if Congress fails to act before the end of 2016, nearly 11 million Americans who rely on SSDI will face a 20 percent across the board cut in benefits.

“The Arc calls on Congress to act promptly to prevent this catastrophic cut to our SSDI lifeline. A minor, commonsense financial adjustment can ensure that both of Social Security’s Trust Funds will be able to pay full scheduled benefits through 2034, without any cuts to Social Security disability, retirement, or survivors benefits. We applaud legislation introduced yesterday to do precisely that, by paying all Social Security benefits out of a single Social Security Trust Fund: the One Social Security Act of 2015, sponsored by Rep. Xavier Beccera (D-TX) with 22 original cosponsors.

“The Arc urges Congress to ensure that Social Security will be there for all Americans — including people with disabilities and their families — for generations to come, and to reject any cuts to our Social Security lifeline,” said Ford.

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 more than 665 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.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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Easy Ways to Infuse Physical Activity Into Daily Life

/in /by The Arc

Staying physically active, along with eating healthy, is one of the most important things individuals with intellectual disabilities (ID) can do to make sure their body stays healthy and in shape. However, many individuals with ID don’t get the recommended amount of physical activity per week. There are many reasons why individuals don’t get this recommend amount. Transportation issues, not knowing how to get started, and expensive and unaccommodating gyms are just a few.

Being physically active doesn’t mean they have to spend hours in the gym though. Finding small ways in daily life that they can increase their physical activity level will help them to become more active and healthy without having to set aside a lot of extra time, find transportation, or pay expensive fees.

Here are five easy ways to help individuals with ID infuse physical activity into their daily life.

  1. Walk – If they are in a wheelchair and can’t walk, wheel. If they live in community that is save and well paved, walking is an easy and free activity that has many great health benefits! Make it social and start a walking club in the community or with friends. If it’s close enough (and there’s a safe path) walk to the store to run small errands, etc.
  2. Dance – Turn up that music! Dancing is a great way to burn calories and most of all is fun! Set aside 10-20 minutes after lunch and/or dinner for dance time. It’s a great way to get up after a meal and burn some calories that doesn’t require any special equipment or skills.
  3. Stretch – Waking up ten minutes earlier and allowing time to do some proper stretching will help to get blood flowing and muscles warmed up for the day. Doing this every day will help increase flexibility, decrease injuries, and is a great way to wake up and get the day started.
  4. Garden – Growing and maintaining a garden is a great way to get in some extra activity and learn responsibility. And they’ll have fresh vegetables to show for it! It also encourages healthy eating and education as individuals learn about what they’re growing.
  5. Utilize TV time – Watching small amounts of TV is OK, but it’s still a lot of sitting time. Utilize the time during commercials to do small exercises such as squats, arms circles, or marching in place. You could even make a game out of it. This will give individuals a few extra minutes of activity per day while watching their favorite TV shows.

Finding small ways to gradually increase physical activity throughout the day will help to get individuals with ID in a happier mind frame and slowly expose them to fun subtle ways to be more active, without making fitness seem like a chore. Gradually, they will start to have more energy and be healthier without even noticing it!

For more information on health and nutrition, check out The Arc’s HealthMeet project, which strives to help individuals with ID improve their health and quality of life.

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Senate Passes Older Americans Act, Expanding Eligibility for National Family Caregiver Support Program

/in /by The Arc

On July 16, the Older Americans Act Reauthorization Act (S. 192) passed the Senate without amendment. S. 192 is sponsored by Health, Education, Labor, and Pensions (HELP) Committee Chair Lamar Alexander (R-TN), Ranking Member Patty Murray (D-WA) and Senators Richard Burr (R-NC), and Senator Bernie Sanders (I-VT). Among many other things, the bill includes a fix to the National Family Caregiver Support Program (NFCSP), which provides information to caregivers about available services, assistance in accessing services, individual counseling, support groups, caregiver training, respite care, and supplemental services. S. 192 would extend NFCSP eligibility to older (age 55 and over) caregivers of their adult children (age 19 to 59) with disabilities. The House is expected to take up the measure in the near future.

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The Arc Celebrates the ADA’s 25th Anniversary

/in /by The Arc

On July 26, we will celebrate the 25th anniversary of the Americans with Disabilities Act (ADA). The ADA affirms the rights of citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities, and telecommunications. It is a wide-ranging law intended to make our society accessible to people with disabilities.

The Arc played a leadership role in the passage of the ADA. Our volunteer leadership, state chapters, local chapters, and public policy staff worked closely with others in the disability community to make the ADA a reality. The bottom line is that the passage of this transformative legislation would not have been possible without the hard work of Congressional leaders and disability advocates, like you! As we celebrate this monumental achievement and the 25 years of implementation of this law, we can’t help but reflect on what the ADA really means to individuals with intellectual and developmental disabilities and their loves ones.

To commemorate this special anniversary, we asked members of The Arc’s National Staff to share with us what the ADA means to them. You can read a few of the responses below.

We invite you to visit our social media channels, on Facebook (The Arc US) and Twitter (@TheArcUS) and share with us what the ADA means to you. We want you to be part of the larger conversation so be sure to use the hashtag #ADA25.

“I have been a participant in so many meaningful opportunities. I attended two very highly respected universities; I have travelled extensively, from Kauai to Istanbul to Moscow. And I interned and worked for a prestigious corporation on Wall Street. Each of these experiences has been the product of public policy, for I am an individual with a physical disability. It was through the National Business and Disability Council (NBDC) that I secured a summer internship in New York City. In light of these life events, is it any surprise that I am totally convinced of the power of ADA to transform lives?” – Taylor Woodard, Paul Marchand Intern, The Arc

“I have the ADA to thank for bringing me to The Arc, and introducing me to what has become a life-long commitment to advocating with and for people with disabilities. About 20 years ago, I was hired to direct an ADA project that created materials for criminal justice professionals about accommodations people with intellectual and developmental disabilities need in order to receive fair treatment in the system. This seed money from the Department of Justice eventually led to the creation of a national center in 2013 (see https://www.thearc.org/NCCJD). It’s frightening to think how the lives of people with disabilities would be different today without the passage of the ADA. It’s equally exciting to dream about what the next 25 years may hold!” – Leigh Ann Davis, Program Manager, The Arc’s National Center on Criminal Justice and Disability

“I’ve had the honor of supporting individuals with disabilities and their families since 1978. Back then professionals were taught that we knew best. The idea that a professional would ask a parent, let alone a person with a disability, what they wanted out of life was unheard of. Once the ADA was enacted many professionals were slow to support the paradigm shift from institutionalization to specialized services to full community membership. I’m grateful that my world opened. I count myself as a supporter, listener, and friend. I’m a follower and not a leader. I join in celebrating the fact that more and more people with intellectual disabilities are living full lives in their communities. However, we still have a very long way to go since so many remain ignored and unfilled. So as we celebrate, let’s not forget the 1980 battle cry from Senator Ted Kennedy, ‘For all those whose cares have been our concerns, the work goes on, the cause endures, the hope still lives and the dream shall never die.’” – Karen Wolf-Branigin, Senior Executive Officer, National Initiatives, The Arc

“Having two siblings with I/DD and working as a disability rights attorney, I see the profound value of the ADA in both my personal and professional life. While there is still so much more work that needs to be done to make our systems work better for people with disabilities, much of the progress we have achieved and continue to work towards every day at The Arc and throughout the disability advocacy community would simply not be possible without the vital protections and enforcement mechanisms the ADA provides. I am eager to see what we will achieve over the next 25 years as we continue to use the ADA as a fundamental tool to protect and enforce the civil rights of individuals with disabilities!”- Shira T. Wakschlag, Staff Attorney, The Arc

“The ADA certainly transforms lives, as I can attest to. It has helped me to reach my goals and enabled me to be a trailblazer and set the way for individuals with autism and other developmental or intellectual disabilities. I have had numerous opportunities, one being able to participate in my DD council’s Partners in Policy Making program where I learned how to be a self-advocate and stand up for myself and others. It has also helped me to be employed at one of the most wonderful places to work, The Arc of the U.S.” – Amy Goodman, Director Autism Now, The Arc