Learn How HealthMeet® is Promoting Healthy Lives!

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.

Supporting The Age Wave: Baby Boomers and Autism

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.

Step into Good Foot Health

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 (I/DD) 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 I/DD 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 I/DD 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 I/DD 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

For more information on how to take care of your feet better, check out the HealthMeet project’s Resource Page.

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

Third in a Three-Part Series

By Laurie Hanson, Esq., Special Needs Alliance

Special Needs Alliance LogoThere are an estimated 600,000-700,000 adults with intellectual and developmental disabilities (I/DD) 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.

Preventing Falls for People with Intellectual Disability (ID)

HealthMeetFalls 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. Check out this checklist from the Centers for Disease Control (CDC) on how you can make a home or building safer.
  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 (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.

Love Your Heart

Heart graphic

Corazon image via Ilhh, used under a Creative Commons license

The leading cause of death for both men and women in the US is heart disease, with 1 in 4 deaths being attributed to it. February is recognized by many organizations as American Heart Month. While there are things that can affect your heart that are out of your control (such as genetics, race, sex), luckily there are many things that can be easily altered in an individual’s lifestyle that can help improve your heart health.

Individuals with intellectual and developmental disabilities (IDD) are at an increased risk of developing secondary health issues and engaging in risky behaviors that can lead to an increased risk of heart disease. However, many of these secondary issues can be modified, and in exchange lead to a healthier heart. We found what we believe are six of the top factors that affect individuals with IDD (and those without IDD) that can be altered/maintained in their lifestyle to help keep their heart healthy.

  1. Eat healthy and be physically active

Healthy eating leads to increased energy, weight loss, and lower cholesterol levels. If possible, try to stay away from frozen/processed meals, which can be high in trans-fat, and eat fresh foods. Some other healthy eating tips are:

  • Make half your plate fruits and vegetables.
  • Don’t completely cut yourself off from treats! Once-a-week type special treats or sweets help to reduce cravings and binge eating, but should not be eaten every day.
  • On Sundays, plan your meals for the entire week, so you know what you’ll be eating each day.
  • Cookbooks such as Cooking By Color, can help individuals with IDD learn about how to prepare simple, healthy meals at home.

CDC Vital Signs put out a report in May 2014 stating that nearly half of all individuals with disabilities get no physical activity. Recommended strategies to be more physically active are:

  • Get 30 minutes of physical activity five days a week. This can include joining a walking club, dancing, online workout videos, or attending a yoga/fitness class at your local Chapter of The Arc or fitness center.
  • If 30 minutes is too long to exercise all at once, split it up and do three 10 minute segments throughout the day. Individuals will reap the same health benefits as doing it all at once.
  1. Maintain a healthy weight

Thirty six percent of individuals with disabilities are considered obese as compared to 23% of individuals without disabilities. Regular physical exercise and healthy eating will help individuals to maintain a healthy weight and reduce the risk of developing type II diabetes, which is another risk factor that contributes to heart disease.

  1. Quit smoking

According to the CDC the rate of individuals with disabilities that smoke is notably higher than of those who do not have a disability. The chemicals and plaque from tobacco build up on the inside of the arteries, causing the passageway to narrow. This puts a lot of extra stress on the heart muscle to work harder than usual to make sure blood is circulating through the body.

Some resources to help individuals with IDD quit smoking include…

  1. Maintain a healthy blood pressure level

Individuals with IDD are 13% more likely to have high blood pressure/hypertension than those without disabilities. One cause of this could again stem back to lack of physical activity and poor eating habits. Normal blood pressure is 120/80. Other ways to help reduce blood pressure to safe levels are:

  • Reduce sodium – replace salt with spice to flavor foods
  • Don’t smoke
  • Limit stress levels
  • Reduce alcohol consumption or drink in moderation
  • In extreme cases medication may be required
  1. Don’t drink alcohol or drink in moderation

Moderation for men is 1-2 drinks per day and 1-per day for women. Excessive alcohol use over time can cause high blood pressure, irregular heartbeats, contribute to cardiomyopathy and stroke, or lead to heart failure.

  1. Manage stress

Stress levels for some individuals with IDD can be elevated daily due to frustration caused by communication barriers with peers/physicians/staff, or lack of ability to fully grasp certain concepts in school/work/social environments. In stressful situations, individuals might also choose to respond in non-healthy ways, such as overeating, smoking, or drinking alcohol as ways to cope. Enforcing good daily habits to deal with stress, such as exercising, meditating, or talking with friends/family, will help individuals with IDD manage stress in a healthy manner.

Making a few of these changes could have a huge impact on your heart and the way your body works. Learn more about how these 5 categories and how to improve your health by utilizing the resources from The Arc’s HealthMeet project.

Hypertension More Prevalent in Individuals with IDD

Woman with nurse34% of adults with disabilities have high blood pressure compared to 26% of individuals without disabilities. High blood pressure, or hypertension, is often called the “silent killer.” Many people have high blood pressure and go about their business every day not even knowing it. This is one of many reasons why regular check-ups are vital to maintaining good health. A recent study published by the CDC stated that individuals with disabilities are 13% more likely to have high blood pressure levels than individuals without disabilities. Individuals with mobility issues have an even higher risk and are 23% more likely.

Blood pressure, which is the pressure of blood against the walls of blood vessels, can be hazardous if it remains at a continually high level. Normal blood pressure is 120/80 or less. Any higher than 120/80 and it is considered at risk for high blood pressure (also called pre-hypertension). A reading of 140/90 or higher is categorized as hypertension and you should consult your doctor. High blood pressure basically means that the heart is working overtime circulate blood and keep the body running efficiently. Working at this escalated level causes wear and damage to the blood vessels and heart, which leads to an increased risk of heart disease and stroke.

Factors that can contribute to high blood pressure are obesity, lack of physical activity, and diabetes – all issues that are very prevalent in individuals with disabilities. Foods with high percentages of sodium, fat, and cholesterol are also contributors and unfortunately can be found in may pre-made or frozen foods; which may be distributed to individuals at group homes, shared living residents, etc. because they are cost efficient and quick/easy to prepare. Preparing fresh meals at home is the best way to know what ingredients and how much salt is going into meals.

While some factors, like genetics and family history, you can’t change there fortunately are many easy things that you can modify in your daily life to try to lower and maintain your blood pressure level. Some of these things include:

  1. Eat a healthier diet including many fruits and vegetables.
  2. Reduce sodium intake. (Look for low/no sodium on food labels, rinse canned food to remove excess salt)
  3. Maintain a healthy weight.
  4. Get regular physical activity.
  5. Don’t smoke (or quit if you currently do smoke).
  6. Limit alcohol intake.
  7. Reduce stress.

Individuals that can’t bring their blood pressure levels down by making changes to their diet/lifestyle may need medication from a doctor to help lower levels. Many individuals with disabilities are on other medications as well, so make sure to ask the doctor about side effects and if previous medications will be an issue.

Having blood pressure checked every 1-2 years will help to monitor levels. If high blood pressure is detected, it is a good idea to check it more regularly. A blood pressure machine can easily be purchased at most drug stores or pharmacies at a relatively low cost.

For more information about eating healthier, increasing physical activity, and more check out The Arc’s HealthMeet page with plenty of resources and archived webinars to get started.

Issues That Affect Oral Health for Individuals with IDD

Toothpaste and toothbrush

Image via Kenneth Lu, used under a Creative Commons license

Individuals with intellectual and developmental disabilities (IDD) often suffer from many health-related conditions.  According to several studies and through The Arc’s HealthMeet project we have learned that poor oral health has been a significant problem for individuals with IDD.  One-third of individuals with IDD have untreated cavities and eighty-percent have untreated gum disease.  Tooth or gum pain can cause individuals to stop eating, affect speech/communication, and affect overall behavior and mood.

There is a multitude of reasons as to why oral health is an issue.  Accessibility to/from appointments, around the dentist office, and with equipment can all be large obstacles.  Financial reasons are also another large factor as some dentists won’t accept Medicaid or dental visits aren’t covered under their current insurance plan.  The lack of training and education for dentists regarding how to communicate and work with individuals with IDD can also impact the quality of services they are entitled to receive.

Due to some of these constrictions, individuals with IDD are less likely to visit the dentist for routine care.  Fear of the dentist can make getting routine cleanings and check ups a traumatizing experience.  These preventative visits, which can help to find cavities and signs of gum disease early on, are then skipped letting small issues grow into larger problems.   Organizations such as Practice without Pressure and the Blende Dental Group are striving to help improve oral health in individuals with IDD in their local areas by providing practice sessions to reduce fear and anxiety, and offering home visits.

Individuals with IDD tend to have poor eating habits when compared to the general population, which can mean eating more sugary foods, sodas, fast food – all things that have higher levels of bacteria that cling to teeth, causing plaque to build up and eat away at the enamel on your teeth causing cavities. Problems such as sensory issues, the taste/feel of the toothpaste or toothbrush, and inability to grasp the toothbrush can all make daily brushing a challenge.  Other times it’s as simple as just not remembering to brush twice a day letting plaque sit and eat away at teeth overnight while sleeping.

Saliva is a natural agent that helps neutralize the acidity/plaque levels in our mouth.  However, some medications (examples can be high blood pressure meds, antihistamines, antidepressants, etc.) can have a side effect of lowering the levels of saliva in the mouth (often called dry mouth).  These lower levels mean that less plaque is washed away and it has a longer time to linger on teeth causing decay.  Certain liquid medications can also be high in sugars as well.

While some of these obstacles are more difficult to change and will take time, there are many things that influence your oral health status that can be more easily altered in your daily routine.  Below are some tips that can help make daily oral care and prevention easier for individuals with IDD:

  • Poking a hole in a tennis ball and inserting the handle of a toothbrush or molding putty around the handle will make it much easier to grip and use.
  • Simple diet changes, like cutting out sodas and sweets, in addition to also assisting with weight loss and energy levels, will also help lower plaque levels in your mouth that can cause cavities.
  • Reduce snacking between meals – every time we eat our mouth turn into an acidic environment. In between eating is when our mouth has a chance to neutralize and return to normal levels. More snacking means the mouth stays at a higher acidic level for longer periods.
  • Set alarms on phones or leave notes in the bathroom as reminders to brush teeth in the morning and before going to bed.  Apps for your phone can be downloaded to set reminders.
  • If possible, try to take medications at meal times or at least before you brush your teeth at night so that plaque does not sit overnight on your teeth.

Being aware of some of these factors that can influence your oral health will help individuals be more conscious in the future and realize the importance of trying to get to the dentist yearly for routine care. Check out Healthmeet’s webpage for more informationresources and webinars on oral health care for individuals with IDD.

Champions Change Lives

Become a ChampionThis year– we shared with you inspirational stories about three individuals who are working to create a better future for their families, their peers and the nation as a part of The Arc’s nationwide movement towards independence and inclusion for all people with intellectual and developmental disabilities (I/DD) and their families. Each of them are champions for The Arc’s movement.

Champions like David — creating a future for himself while helping his brother achieve his dream of sustaining employment in the community. Champions like Kim — advocating so strongly about inclusion for both of her daughters that she founded a nonprofit to foster an inclusive environment for kids in schools across the country. Champions like Joe — dedicating his life’s work to creating a better future for himself, his brother, and his peers as a selfadvocate and teaching others to be their own best advocate.

David, Kim, and Joe are a true inspiration. Looking to the future, it is clear that we need many more champions to realize the vision of individuals with I/DD getting all the supports they need to lead a fully inclusive life.

This year, The Arc engaged in groundbreaking work to innovate and address the needs of individuals with I/DD through our national initiatives including: Wings for Autism, our Center for Future Planning, and our National Center on Criminal Justice and Disability, all while continuing to aggressively pursue our legislative agenda.

Our Wings For Autism® program really took off this year. A travel training simulation for families that have a son or daughter with autism or other disabilities continues to gain traction and is being implemented by chapters of The Arc at airports across America including in North Carolina, Florida, Alaska, Oklahoma, Washington, Arizona, Virginia, Maryland, District of Columbia, Connecticut, New Hampshire and Massachusetts.

The Center for Future Planning a resource center designed by The Arc to help families and individuals with I/DD to create person-centered future plans. The center will support families by empowering person centered planning in order to help them articulate what they would like to achieve over the course of their life and then providing a concrete plan to help them do so.

We also broke ground to protect the rights of people with disabilities in the criminal justice system, through the launch of our new National Center for Criminal Justice and Disability funded by the U.S. Department of Justice.

However, these initiatives require the dedication and generosity of champions like you to ensure they become fully effective, sustainable and continue to meet community needs into the future.

It is only through your financial support that The Arc is able to continue its important work.

The collective voice of champions like you will advance and protect the human rights of individuals with I/DD and help them achieve full inclusion and participation in their communities today and into the future. Please become a champion for The Arc and Donate Today!

Planning for the Future of a Family Member with Disabilities

Second in a Three-Part Series

By Laurie Hanson, Esq., Special Needs Alliance

Special Needs Alliance LogoThere are an estimated 600,000-700,000 adults with intellectual and developmental disabilities (I/DD) in the United States who are living with aging family members and with no plan in place for their future. 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 expressing wishes for the future, supporting daily and major life decisions, and financing the future.

Below, our colleagues from the Special Needs Alliance emphasize the importance of planning and trusts.

In the first installment to our series, we discussed third party special needs trusts (SNT), also known as supplemental needs trusts, currently the best vehicles available to provide for a family member living with a disability after the parents’ death. In order to use this vehicle, parents need to understand how a trust works, how to tailor it to fit the specific needs of their family member, and how much money should be placed into the trust. Consider the following example:

Gary Smith wants Trusted Community Bank to manage his money after his death for the benefit of his daughter, Beth Smith, who is living with Down syndrome. Beth lives in a group home. Her support services are paid by a Medicaid waiver, and her room and board is paid from her Supplemental Security Income (SSI) benefit. Gary does not want the money he provides to impact Beth’s SSI or her Medicaid waiver, and he has very specific ways he wants the money to be used for her benefit. Gary is single and has three other children.

What is a trust? A trust is an instrument to manage money. A trust is established by written agreement between the person who funds the trust (the grantor) and the person or financial institution responsible for managing the money in the trust (the trustee) for the benefit of a person called the “beneficiary.”

What is a third party special needs trust? A special needs trust (SNT) is a trust established to provide for the well-being and needs of a person living with a disability. As long as the trust is established and administered correctly, neither the property in the trust nor the distributions from the trust should jeopardize the beneficiary’s Supplemental Security Income (SSI) or Medicaid. A third party SNT is a trust funded with money that does not belong to the person with a disability. In the example above, Gary (the grantor) can establish an SNT, then place his assets in the trust to be managed and administered for Beth’s benefit. He would give instructions in the trust agreement as to how the money should be used for Beth’s benefit and what happens to the money following Beth’s death.

Who should serve as trustee? Choose the trustee carefully. Often it’s advisable to select a professional or bank with experience managing special needs trusts. It is important that the trustee be familiar with complex government regulations, which change frequently. While a family member could serve as trustee, the individual should be skilled at paperwork and accounting, and able to work well with the beneficiary. Sometimes it is better to leave trust administration to the professionals. This is an issue to discuss with an attorney before making a decision.

What property is controlled by the trust? Only money or property legally given to the trust is controlled by the trust. If property is not titled in the name of the trust, it is not controlled or protected by the trust.

  • A home can be titled in the name of the trust.
  • Gary could make the trust the beneficiary of his IRA or other retirement accounts, his life insurance, or CDs and savings bonds.
  • Gary could leave money and property to the trust in his will.
  • A bank account can be opened to place money in a checking or savings account in the name of the trust.

How much money should be placed in a third party SNT? This depends upon the beneficiary with I/DD! Parents should work with a financial planner to make projections based on the family member’s living expenses, income, public benefits, caregivers, etc. For instance, say that Gary wants someone to visit Beth as often as he does – twice a week. In addition, every Friday he makes arrangements for someone (sometimes him) to go to dinner and a movie with Beth. This allows him and other people in Beth’s life to see her in her home and assess how she is doing. He very much wants this to continue following his death. He will have to project the cost of providing this service over Beth’s life expectancy to determine how much money should be placed in the trust.

What is a third party pooled SNT? A third party pooled SNT is a master trust established by a non-profit corporation to hold a third party’s assets for the benefit of a person with a disability. A parent will sign a joinder agreement to set up a sub-account within the pooled trust for the benefit of his or her family member. The funds in the sub-account are pooled with funds of other accounts for investment purposes only, but a separate sub-account is maintained for each beneficiary. Money in a sub-account of a properly established pooled trust will not jeopardize a beneficiary’s Medicaid and/or SSI benefits.

Why use a pooled trust?  Pooled trust sub-accounts are most beneficial when the amount in the trust will not be enough to justify the expense of a corporate trustee (such as a trust company or a bank). Also, the trustee of the pooled trust is professional and often has special knowledge about persons with disabilities. Pooled trusts should be expected to remain up-to-date on changing laws and regulations affecting federal benefits and their relationship to trusts. Many chapters of The Arc, for instance, have established pooled trusts for families and others to use. Some pooled trusts are run by chapters and others are independent non-profit organizations.

Why not “disinherit” a family member with a disability and rely on the siblings to care for him/her? This is very risky – siblings could move away, die, or become ill themselves. Some of them just decide to use the money for themselves. And in a divorce, the sibling’s spouse may be entitled to some of the funds intended for the person with I/DD. If that happens, the person with the disability could be left unprotected.

What happens if there is money left in the third party trust or pooled trust sub-account when the beneficiary dies? The grantor states in the third party SNT agreement what he or she wants to have happen. In this case, Gary could state that at Beth’s death, any funds left in the trust should be distributed to his other three children, his grandchildren, or a charity. In a pooled trust sub-account, the language of the pooled trust master agreement will often specify that a certain percentage remain with the master trust at the death of the beneficiaries before distribution to other remainder beneficiaries. Pooled trusts vary on this, so families should check this detail.

Third Party SNTs can be complicated and state requirements vary, so families should work with professionals who are experienced with the nuances of changing government regulations. But the effort pays dividends, and can ensure a more secure future for a loved one.

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.