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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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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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White House Conference on Aging: A Critical Moment for Individuals With IDD and Aging Americans

/in /by The Arc

The White House Conference on Aging will be held on July 13, 2015, during a momentous year in which we mark the 80th anniversary of Social Security as well as the 50th anniversary of Medicare, Medicaid, and the Older Americans Act. The conference provides an opportunity to discuss these critical programs and find ways to strengthen them to continue to serve older Americans in the next decade.

These programs not only serve older Americans, but they also serve people with intellectual and developmental disabilities (IDD). At The Arc, we are committed to advocating for people with IDD and their families. This means ensuring that individuals with IDD have services in place throughout their lifespan and that aging caregivers of people with IDD have the support they need.

We spoke to advocates and caregivers to ask them what issues need to be addressed at the White House Conference on Aging. Here are their questions:

Carla Behnfeldt: I am 55 years old and live in Pennsylvania. My parents, who are n their 80s, and my 57 year old brother who has intellectual and developmental disabilities, all reside in upstate New York. My parents worked hard to find a good group home for him near their home and to get him Medicaid long term services and supports. Due to their age, my parents are in need of more and more support from me, and I would like for us all to live close together. I looked into having my brother move to Pennsylvania. I was shocked to learn that he might have to wait years to receive Medicaid services in Pennsylvania. And, there is no guarantee that Pennsylvania would provide him the services that New York does. My parents won’t move if my brother can’t move. The fact that my brother’s services can’t be transferred between states makes it very difficult for me to become my brother’s primary supporter and to provide my parents with the care they deserve as they age. What are your proposals to make Medicaid benefits portable between states?

Margaret-Lee Thompson: I am 70 years old. For 21 years, I worked as a parent coordinator at The Arc of King County in Washington State. Our son Dan, who had Down syndrome, died when he was 36. Many of the parents I worked with are in their 70s, and their children with intellectual and developmental disabilities are still living at home with them. Their sons and daughters are middle-aged now, and when the family tries to get the government support that would enable the son or daughter to move into a new living arrangement, the families are told that they need to go on a waiting list. These lists are often a decade or more long. The Community First Choice Option created by the Affordable Care Act, with its additional federal matching funds in 2014-15 will allow our state to be able to have the funding to move 1000 individuals onto our Basic Plus Medicaid Waiver. But there are still 10,000 individuals and families in our state who have NO PAID SERVICES. The senior families have waited the longest. Many have simply given up asking for help. This is just wrong. It is not uncommon for the individual to lose their last parent, be moved from their home and be moved in with people they have never met – all on the same day. The parents should be able to support their sons and daughters while they transition to a new home. What are you doing to change things so these parents can live out their senior years with a sense of peace and comfort in the knowledge that their sons and daughters will live a good life after they are gone?

Pia Muro: I am 70 years old and live in Tustin, California. My younger daughter, Crystal, is 29 and has Down syndrome. She works at a senior center and lives at home with me. We’ve started the planning process as a family to make sure she continues to live a happy and independent life when I’m no longer able to provide support.

English is my second language and the planning process can be difficult to understand. What is being done to make sure that people from different backgrounds can get support from people who speak our language and understand where we are coming from?

Carrie Hobbs Guiden, Executive Director, The Arc of Tennessee: There are nearly a million families in the United States in which adults with intellectual and developmental disabilities are living at home with an aging caregiver. Most do not have a plan in place for what is going to happen when these caregivers are no longer able to provide support. There are many barriers to planning – including fear – but it is important that families make a plan for the future. They should gather information about the family’s history and wishes, and they should explore housing, employment and daily activities, decision making supports, and social connections. What are your proposals to help these families to plan for the long term needs of their adult children with disabilities?

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (IDD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with IDD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at futureplanning.thearc.org for more information.

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Summer Safety Tips

/in /by Guest Blogger

Co-authored by Vee Cecil and The Arc. Vee is a Wellness Coach, Personal Trainer, and Boot camp Instructor who lives in Kentucky with her family.

Summer is officially in full swing. And for many, that means spending more time outside on sunny days or trips to local pools or beaches. Swimming is a great way to fill up those summer days for many reasons. It is an excellent form of exercise and it has also been shown to have mental health benefits.

That said, any time individuals with intellectual and developmental disabilities (I/DD) are around water, extra precaution should be taken. The National Autism Association pegs drowning as one of the leading causes of death among children with autism, and as Prevention1st.org notes, children with developmental disabilities are twice as likely to suffer an unintentional injury. One factor that further endangers individuals with autism and other intellectual disabilities is that they may not immediately understand the dangers of water. Especially in the case of children with autism, they may even be drawn to it or fascinated by it. This is why it is so important that parents, caregivers, and individuals with I/DD and autism understand water safety practices. Adaptive swim lessons are given through the YMCA at various locations throughout the US. Click here to see a list of locations.

CDC’s recent issues of Vital Signs stated that the rates of melanoma, the most deadly form of skin cancer, have doubled over the last 3 decades. Applying (and remembering to reapply) sunscreen when outdoors, after getting out of the water, and especially during peak sun hours will help to prevent sunburn and furthermore skin cancer. Sunscreen should be at least an SPF of 15 and applied on sunny as well as cloudy days.

Monitoring how much time is spent outside on hot days is also very important. Overheating, (often called heat exhaustion or in extreme cases heat stroke), can be serious if the indicators are overlooked. Signs of heat illness that can occur when spending too much time outside can include:

  • Headache and dizziness
  • Nausea and vomiting
  • Red clammy skin
  • Not sweating when hot out (or stop sweating)
  • Seizures

If any of these symptoms are present, an individual should get out of the sun immediately and head indoors or to a shady spot. If available, a cool wet washcloth should be applied to their skin to help bring down their body temperature. To help prevent overheating make sure to drink plenty of water before, during, and after spending time outside. When planning outdoor events, keep in mind that the sun is at its hottest between 10am and 4pm, so having spots where individuals can go inside to cool down or seek some shade is vital.

Making sure those you care for are well informed about how to stay safe in the sun and near water this summer is essential. The Arc’s HealthMeet project has developed Water Safety, Sun Safety, and Heat Sickness flyers to post in and around your organization to help teach and reinforce these important lessons.

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Osteoporosis Prevention

/in /by The Arc

Osteoporosis, a condition where an individual’s bones become increasingly brittle and fragile, is one of the most commonly diagnosed bone diseases in the U.S. However, screening and diagnosis for individuals with disabilities are commonly overlooked. While screening for the general population usually starts later in life around age 65, individuals with disabilities should start being screened much earlier since the risk often comes at an earlier age. Osteoporosis is a secondary condition that can be alleviated (and in some cases prevented) if proper treatment and screening measures are in place.

Osteoporosis usually affects women (especially postmenopausal) more than men. Women with specific disabilities that impair mobility are even more at risk to developing osteoporosis due to bone loss from immobility. Other lifestyle factors that can contribute to osteoporosis are:

  1. Low levels of calcium and vitamin D
  2. Smoking
  3. High levels of alcohol use
  4. Inactivity
  5. Small bone structure
  6. Frequent use of steroid treatments

Through the HealthMeet project we have found that the rate of falls for individuals with disabilities was 3 times higher than the rate for the general population. Falling can be particularly dangerous for an individual with osteoporosis, which can easily cause fractures and breaks that can lead to increased mobility issues and extensive hospital fees. Making sure homes and organizations are set up to prevent falls will help to decrease the initial risk of falling.

Some steps to take to help prevent osteoporosis are:

  1. Exercise – especially weight bearing exercises to help build bone density
  2. Limit alcohol intake and avoid smoking
  3. Eat a diet rich in calcium and vitamin D – Ask your doctor if you should be taking calcium or vitamin D supplements

Screening for osteoporosis can be difficult due to the tests that are required for diagnosis. Individuals with disabilities may not be able to sit in the required position to obtain x-rays or may have a hard time lying still for the amount of time required for the tests. Primary care physicians need to be educated to screening alternatives such as ultrasound, and the importance of prioritizing prevention methods for individuals with disabilities.

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Building Financial Literacy and Building Acceptance

/in /by The Arc

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

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

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

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

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

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Learn How HealthMeet® Is Promoting Healthy Lives!

/in /by The Arc

In 2012, The Arc launched the HealthMeet® project because we believe people with intellectual disabilities (ID) should have access to high quality, comprehensive, and affordable health care. HealthMeet® offers free community-based health assessments to people with ID at selected chapters in California, Massachusetts, New Jersey, North Carolina, and Pennsylvania. Over 1,500 people have been assessed through the HealthMeet initiative and 9 percent of those participants reported to have an autism spectrum disorder. At The Arc, we believe that Autism Acceptance is promoting healthy lifestyles.

Overall, HealthMeet® has been a positive experience for participants and chapters of The Arc involved in the project. The health assessments provide an opportunity for participants to be assessed in the areas of vital signs and body composition, respiratory health, vision, hearing, oral health, and foot and mobility issues. Participants also feel empowered to take charge of their health by engaging in dialogue with health assessors about the status of their health and recommendations for follow-up care. As Erika Hagensen of The Arc of North Carolina has noted “health is not a taboo topic, it’s an empowering topic.”

The chapters of The Arc involved in HealthMeet® have leveraged community resources and developed partnerships with local entities such as public health departments, nursing schools, and medical schools. HealthMeet® has also been a learning experience for many of the healthcare professionals that conduct the health assessments because they now feel more equipped to serve people with ID. Through HealthMeet®, healthcare providers have developed better communication skills that will ultimately help them serve the participant’s healthcare needs.

To learn more about how The Arc is increasing health opportunities for people with ID view this video:

If you are a healthcare provider, national organization of healthcare providers, caregiver, chapter of The Arc, or service provider (not affiliated with The Arc), we ask that you join our effort to increase your knowledge of the I/DD community and serve people with I/DD. Learn more by viewing this video:

HealthMeet aims to reduce health disparities experienced by people with intellectual or developmental disabilities (I/DD) so they can live a longer and healthier life. Through free health assessments and training, HealthMeet helps people with I/DD learn about their health needs. HealthMeet also offers training to improve public, health professional, and caregiver awareness of health issues faced by people with I/DD. 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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Supporting the Age Wave: Baby Boomers and Autism

/in /by The Arc

Since 2010, baby boomers in the United States have been turning 65 at the rate of approximately 10,000 a day. Some of these new baby boomers are people with autism. At the same time, over 3.5 million adults with autism and other developmental disabilities are living with family members. In nearly 25 percent of these households, the family caregivers are over 60 years of age. During Autism Acceptance month, we should address the challenges that the age wave creates for people with autism and their family members.

To start, people with autism over the age of 65 should learn about benefits that may be available to them in the disability and aging service systems. Learn about what public benefits the person with autism may be eligible for and apply for the appropriate benefits. In addition, Area Agencies on Aging (AAA) can help you access services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit www.ncoa.org for more information about additional benefits available to seniors.

Supporting aging parents of people with autism is another critical issue that needs to be addressed. In addition to the health and financial issues that all seniors face, caregivers are often overwhelmed by concern about what the future will look like for their son or daughter once they can no longer provide support. Although planning for the future can be challenging and emotional, it is necessary and possible.

Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by adults with autism, their caregivers, and other family members. The Arc’s Center for Future Planning offers information and resources to adults with I/DD, aging caregivers, and other family members.

During Autism Acceptance Month, here are some ways you can access more help:

The Arc’s Center for Future Planning aims to support and encourage adults with intellectual and developmental disabilities (I/DD) and their families to plan for the future. The Center provides reliable information and practical assistance to individuals with I/DD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning. Visit the Center’s website at futureplanning.thearc.org for more information.