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.

Fall Is Racing Season!

If you’re a runner or have any runner friends you might have heard them talk about fall being race season. To many runners, the crisp autumn weather is considered the “perfect” running weather and a lot of people head out to local parks, community centers, etc. to take part in the fun of running a race – whether it’s a 5k (3.1 miles) or a marathon.

CDC’s Vital Signs earlier this year sent out shocking statistics that half of all adults with disabilities get no aerobic exercise at all and are three times more likely to have heart disease, stroke and diabetes. For those that are able, running/walking is a great way to get in daily exercise without having to have a special place to go or expensive equipment to use. The only real equipment that is needed is proper shoes and comfortable workout clothing.

While running may be hard for some to start off with walking can actually provide many of the same health benefits as running without all the impact that running endures on the body. Running and walking are both great cardiovascular activities that help to build muscle and endurance, make your heart stronger, and help relieve high blood pressure. They also burn calories which aid in weight loss and reducing the risk of type 2 diabetes.

While running/walking is a very individualized sport that you don’t need anyone else to do it with, it can actually be a very social activity as well. A walking club is a great way to stay active and socialize with friends at the same time. All over the country are runs and walks of various distances that anyone can take part in, regardless of if they have an intellectual disability or not. Now-a-days more and more races are taking the initiative to specifically reach out to individuals with intellectual disabilities to be a part of the action. Girls on the Run (GOTR) is a 12 week running program for girls ranging from 3rd to 8th grade with the goal of finishing a sponsored 5k race at the end of the program. GOTR in Columbia has reached out to The Arc of Midlands to work with them to recruit individuals to join in one of their upcoming races. The Spartan Race is an off-road race combined with different obstacles throughout the course and has grown significantly more popular in past years. The Spartan Race has recently modified their course in certain locations to develop a Special Needs Obstacle Course so that individuals with intellectual disabilities can participate as well.

Completing a race is more than just doing the miles. In addition to the many physical benefits from running or walking there is also a great sense of accomplishment and pride that comes from crossing the finish line filled with the support of spectators cheering you on. It helps to boost overall self-esteem and mood, which is what draws many people back to do another race. Many races give out shirts and some even give medals to everyone who finishes, which is a great bonus to all the hard work and training that has been accomplished.

A popular fun race to do every year is a Turkey Trot on Thanksgiving Day morning. It’s a great way to get the entire family and friends out to be active and do an activity that includes individuals of all ages and fitness levels. It’s also a great way to burn some calories before that big turkey dinner later in the day! So this fall think about joining a running/walking group in your community or start one with friends and family to help increase your fitness level. To find local races in your area, check out the race calendar. Learn more ways to stay healthy and active by checking out The Arc’s HealthMeet page.

Reproductive Health Education and Disability

Holding Hands

Image via Summer Skyes, used under a Creative Commons license

Reproductive and sexual health is a natural part of everyone’s life, but seems to be a very taboo topic for individuals with IDD. Reproductive and sexual education is taught in most public schools all across the United States, but not many programs are out there that explain it so that individuals with IDD can fully understand. If we truly want these individuals to live healthy fulfilling lives, educating them about sexual health should be included. Part of living a fulfilling life is to find healthy relationships that help you throughout life’s ups and downs and increase your emotional happiness, so why should that be any different for individuals with IDD.

While this topic can be uncomfortable and scary to discuss with those you care for, it is necessary. There are stereotypes out there regarding this topic such as – individuals with IDD are asexual or, just the opposite, that they have an over-sexual drive that they can’t control. These stereotypes are just not true. They go through the same feelings and emotions that any other individual may have, but with the subject commonly being overlooked they may not understand what is happening in their bodies or how to properly deal with those feelings in ways that are socially acceptable. Teaching behaviors like when and where certain behaviors are acceptable, proper communication, mutual consent between individuals, and how to be smart/safe about protecting yourself in different situations is essential. A lot of this type of education is about teaching appropriate behaviors while the rest is presenting the actual facts.

Many individuals with disabilities have girlfriends/boyfriends, so it is important for them to know the options about if they are going to act on their feelings how to be safe to prevent the transmission of STD’s and unplanned pregnancy (unless in confliction with religious, cultural beliefs, etc.). Since many of these individuals may have pre-existing medications they take, consulting their physician is the best way to figure out what method of prevention is appropriate and safe for each individual. The American Academy of Pediatrics (AAP) recently stated that birth control and reproductive health should be integrated to become a part of regular care for individuals with IDD.

Another very key reason why this topic should be addressed is because individuals with IDD are at a much higher risk of being sexually assaulted. Statistics say that an alarming 80% of females and 30% of males with IDD are sexually abused during their lifetime. Learning about the difference between good and bad relationships and appropriate boundaries is essential. This type of education will help teach individuals that it is OK to speak up and say no in a situation they are not comfortable in and hopefully will help to prevent these types of incidents from occurring to individuals with IDD in the future.

While it’s a difficult subject for a lot of people, it’s important that we learn to properly teach individuals with IDD about reproductive and sexual health. The Arc’s HealthMeet project has a resource section that contains information about puberty, sexuality and more. Teaching individuals to understand their bodies and feelings will lead to healthier relationships in the future.

Yoga Benefits Everyone

Yoga pose

Yoga image via Tomas Sobek, used under a Creative Commons license

Exercising is a vital part of staying healthy. With so many different fitness fads and activities out there it’s hard to tell which ones actually produce real benefits and which ones aren’t worth your time. While yoga has been around for quite a while now its popularity has grown significantly in past years.  The general population seems to have decided that its results are worthwhile, but what kind of benefits does it have for individuals with disabilities?

Yoga is a combination of body and mind.  It focuses on not only working your physical state, but your mental state as well by incorporating calming breathing and focusing techniques that most don’t even realize they are reaping the benefits from at the time. One of the best parts of yoga is that it is so easily adaptable to all different fitness levels, so individuals of all capabilities are able to participate at the same time (including individuals that use a wheelchair).

Holding the different poses, such as downward dog, cat, tree, etc., engage many different muscles at the same time to strengthen and stretch muscles all over giving you a total body workout. These strengthening activities, which help build muscle control and stability, are great for individuals with disabilities that can make them more prone to muscle weakness. The gradual building of muscle and flexibility overtime using your own body weight aids in reducing the risk of injuries associated with other activities involving heavy weights or machines. These moves and poses rotate joints through their full range of motion helping individuals with disabilities learn to concentrate on specific body parts to improve fine and gross motor skills. It also gets blood flowing throughout the entire body to improve circulation as well. This increased knowledge of balance and control will help with mobility, reducing falls, and hand/eye coordination.   Being more aware and in tune with their bodies can help individuals feel more comfortable and confident in their own their own skin.

In addition, there are also many psychological improvements from yoga too. While yoga is an activity that is done individually going to yoga classes lets individuals be a part of a group of their peers without having the stress from other team sports where their individual performance is going to affect the teams’ outcome. Learning and mastering the different poses leads to a feeling of accomplishment and pride, thus increasing self-esteem levels. Yoga has also been shown to increase focus, concentration and decrease feelings of anxiety. The calming effects that yoga introduces on the body can even be used outside of the yoga classroom in everyday life to reduce negative behaviors. For example, the breathing techniques can be brought into play when individuals start getting angry, aggressive, or stressed to bring them back to a relaxed state.

Another great thing about yoga is that it doesn’t have to be done in a class. Yoga requires very little equipment and can be done almost anywhere – inside or outside, in the grass or beach, or in a yoga studio or your house. Videos that are adapted for individuals with disabilities can be found on NCHPAD’s website and WhatDisability.com. Other resources and books can also be found online too for extra help and information. Yoga terms can be difficult to pronounce, so change the names of the different yoga poses around to make them easier to remember and support with sounds, phrases, etc. While yoga might not be the exercise of choice for everyone, there are many aspects of yoga that can have positive effects, both physically and mentally, for many individuals with disabilities.