The Arc Marks Senate Passage of ABLE Act

Washington, DC – Today, as the U.S. Senate passed the Achieving a Better Life Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act has been approved by both the U.S. House of Representatives and now the U.S. Senate.  With the clock winding down on this session of Congress, now this important legislation can move to President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in both chambers of Congress.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future, depending on their own circumstances.  Our efforts will not be finished if President Obama signs this bill – The Arc will continue to work with the leadership and chief sponsors in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  We remain disappointed that certain pay-fors remain in the bill,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.  If the President signs the ABLE Act into law, The Arc will issue a fact sheet including the details on the bill as it has been revised through the legislative process.  Further details would come through the regulatory process.

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.

Federal Hiring of People with Disabilities Continues to Disappoint

Washington, DC – The federal government’s Office of Personnel Management (OPM) recently released Fiscal Year 2013 data on the hiring of people with disabilities in the government’s workforce. Once again, the report demonstrates that hiring of people with targeted disabilities, including intellectual disability (ID), continues to lag, and the federal government is missing an opportunity to be a model employer of people with disabilities.

“While the last few years have seen some modest increases in the numbers of people with disabilities employed by the federal government, The Arc remains deeply concerned that many people with the most significant disabilities, including jobseekers with intellectual and developmental disabilities, are being left behind. The federal government should implement the strategies the Department of Labor has laid out to meet their goal, and that should involve working with organizations like The Arc, with our nearly 700 chapters across the country, to proactively fill job openings with people with disabilities qualified for a variety of positions open in our government,” said Peter V. Berns, Chief Executive Officer of The Arc.

The federal government, through the Department of Labor, has initiated a new effort to increase the number of people with disabilities employed by entities that contract with the government, asking contractors to aspire to a goal of 7 percent of their workforce with disabilities. In explaining why there is a need to step up hiring of people with disabilities, the Department of Labor has stated: “A substantial disparity in the employment rate of individuals with disabilities continues to persist despite years of technological advancements that have made it possible for people with disabilities to apply for and successfully perform a broad array of jobs.” Meanwhile, in Fiscal Year 2013, the federal government only hired 1,389 people with targeted disabilities, representing 1.32 percent of new hires overall. The category of targeted disabilities includes people with intellectual disability (ID).

One factor in the federal hiring picture is the congressionally mandated budget cuts known as sequestration. These cuts forced federal agencies to put in place furloughs, hiring freezes, and reduce overtime. These budget cuts have trickled down to impact hiring of all new employees, including people with disabilities. Several federal agencies, however, have used their Schedule A hiring authority to make hiring people with disabilities a priority. The Schedule A process is a non-competitive hiring method that provides people with disabilities a path to federal employment.

“The numbers demonstrate that successful employment for people with disabilities is doable with the Schedule A process. Agencies that haven’t used this tool in their toolbox should look to their peers for guidance on how to improve their outreach, in addition to utilizing the competitive process to reach people with disabilities that match the skill sets needed for job opportunities,” said Berns.

The agencies that have demonstrated willingness to hire via with Schedule A include the Equal Employment Opportunity Commission (EEOC), the Department of Health and Human Services, the Department of Labor, the Office of Personnel Management, and the Treasury Department. However, 14 agencies hired no people using this hiring authority in 2013, including the Federal Deposit Insurance Corporation, Federal Trade Commission, and Department of Housing and Urban Development, which each made over 100 new hires but none through Schedule A.

One federal agency that The Arc has recently partnered with to boost the number of people with intellectual disability employed is the Federal Communications Commission (FCC). They have hired five individuals at GS3 and GS4 levels with the opportunity to be promoted to a GS5.

In July, The Arc submitted comments to the EEOC calling on the federal government to become a model employer of people with disabilities, including individuals with intellectual and developmental disabilities (I/DD).

“While we are pleased that the EEOC is moving forward with strengthening federal regulations, the shockingly low rate of federal employment of people with intellectual disability persists. Agencies can act now to step up their efforts,” said Berns.

The U.S. Bureau of Labor Statistics regularly reports that the percentage of working-age people with disabilities in the labor force is about one-third that of persons with no disability. On average, workers with disabilities face significant gaps in pay and compensation, compared to workers with no disability. Additionally, about one in three employment discrimination charges filed with the EEOC allege discrimination on the basis of disability (often, in combination with charges of other types of discrimination).

The Arc’s own research suggests that the employment picture for people with I/DD may be even bleaker. In 2010, The Arc conducted a national online survey, called the FINDS Survey, to obtain perceptions of people with I/DD and their families on a range of life-span issues. Over 5,000 people participated. Only 15 percent of FINDS survey respondents reported that their family member with an intellectual and/or developmental disability was employed.

The Arc Raises Questions in Case of Shocking Abuse and Neglect against Teenager in Anderson, Indiana

Indianapolis, IN – Fifteen years old and weighing less than 40 pounds.  Covered in feces and locked in a room, alone and for an unknown amount of time, by her grandfather.  The police reports released in Anderson, Indiana about the shocking abuse against a teenager with a disability raise significant questions about how this situation could go unnoticed in the community and unmonitored by a litany of state agencies which allowed this child to fall off the radar.

It has been reported the girl was removed from school to be home schooled – Indiana law does not require ongoing involvement from public schools when a family removes a child to be home schooled. Indiana’s Department of Children’s Services (DCS) had contact with the family at one time, but the case was closed.  The police have learned that the child lost access to Medicaid which helped cover nutritional supplements, but as there is no requirement for Medicaid case workers to follow up in such cases, this loss of coverage went unnoticed.

“This is a tragic situation that should never have happened.  The question now is, what can we as a community of advocates, state agencies, and individuals do to learn what went so terribly wrong for this young girl, and how can we all seek and act on ways to keep others safe and free from harm,” said John Dickerson, Executive Director of The Arc of Indiana.

“This is a shameful case of abuse and neglect that should force the system and society to think about how this young girl was hidden in plain sight, starving and without access to medical care, and to force action to prevent something like this from ever happening again.  People with disabilities are far too often victimized, without regard for their basic human rights.  And now this teenager is fighting for her life,” said Peter Berns, CEO of The Arc.

The National Center on Criminal Justice and Disability (NCCJD) is operated by The Arc and is the first national effort of its kind to bring together both victim and suspect/offender issues involving people with I/DD under one roof.  NCCJD is a national clearinghouse for research, information, evaluation, training and technical assistance for criminal justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system.  Currently, NCCJD is developing training for law enforcement, victim service providers and legal professionals that will support police departments, prosecutor’s offices, and other professionals in the criminal justice system to effectively and fairly administer justice for people with disabilities.

NCCJD is a much needed resource for the Anderson, Indiana police force and local prosecutors as they pursue this case and will continue to be a resource for many other communities facing similar tragedies. Persons with disabilities are nearly three times more likely to be victimized – people with cognitive disabilities have the highest rate of victimization.  Children with intellectual disabilities are at twice the risk of physical and sexual abuse compared to children without disabilities.

The Arc Advocacy Network in Indiana can provide information, referral and advocacy to assist and guide individuals with intellectual and developmental disabilities and their families in understanding and applying for government programs, including Medicaid and home and community based services through the Medicaid Waiver program.  It can also serve as a resource to schools and local public and private agencies serving children and adults with disabilities.

Finally, The Arc has launched an online pledge to generate support to end acts of violence, abuse, and bullying of people I/DD.  The Arc and The Arc of Indiana encourage members of the public to sign this pledge to show their support.

Another Congressional Session Poised to End without Ratification of the Convention on the Rights of Persons of Persons with Disabilities

CRPDWashington, DC – As the clock winds down on the 114th Congress, U.S. Senate leaders have informed disability advocates that the Convention on the Rights of Persons of Persons with Disabilities will not be put to a vote because the treaty doesn’t have enough support in the chamber.

“It’s pitiful that once again, the U.S. Senate can’t come together and support a disability rights treaty that simply affirms our nation’s support for people across the globe who seek the same rights we enjoy here in the United States. Over 800 disability, civil rights, and faith groups support ratification of the treaty, representing countless people across the country. But this tidal wave of support has not swayed those in the Senate whose objections to this treaty have been proven false to support this cause. The Arc will continue our advocacy on this issue when Congress reconvenes in January,” said Peter Berns, CEO of The Arc.

The Arc has been working with numerous other disability advocacy groups and U.S. Senators to garner support for the ratification of this treaty, which will promote, protect, and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities. The treaty is modeled after the Americans with Disabilities Act, which affirms the rights of American citizens with disabilities by prohibiting discrimination in employment, public services, public accommodations and services operated by private entities. For years, The Arc’s Public Policy team and grassroots advocates across the country have been working to promote the CRPD and ensure ratification.

The United States signed the CRPD on July 30, 2009, joining the 141 other signing nations. Today, the Convention has 151 ratifications and 159 signatures. On May 17, 2012, following almost three years of thorough review, the Obama Administration submitted its treaty package to the U.S. Senate for its advice and consent for ratification. Senator Bob Dole, who was a champion of the Americans with Disabilities Act, was present for the last attempt to vote on the treaty in December 2012 and urged his fellow Republicans to support it. Unfortunately, his plea along with strong Congressional and disability community support was not enough to overcome the unfounded fears raised by the opposition.

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!

The Arc Marks House Passage of ABLE Act

Washington, DC – Today, as the U.S. House of Representatives passed the Achieving a Better Life Experience Act (ABLE Act), The Arc, the nation’s largest organization for people with intellectual and developmental disabilities (I/DD), released the following statement:

“We are pleased that the Achieving a Better Life Experience Act, H.R. 647, has been approved by the U.S. House of Representatives, and is one step closer to reaching President Obama’s desk.  We appreciate the untiring work of the chief sponsors of the bill and the support of a large and broad representation in Congress.  The ABLE Act is a good example of how members of both political parties can work together to craft legislation that benefits people with disabilities, as disability knows no political, geographic, gender, or ethnic boundaries.

“While the legislation was narrowed due to the constraints from the cost analysis, the approved bill will provide a vehicle for some families and people with intellectual and developmental disabilities to save for the future.  The Arc will continue to work with the leadership and chief sponsors of this effort in Congress to expand this program in the future to ensure that everyone in need can get the maximum benefit from this legislation.  Our goal is to ensure that people with disabilities get the full use of the ABLE Act.   We still have concerns about certain pay-fors in the bill, and hope that the House and Senate can resolve these issues,” said Peter V. Berns, CEO of The Arc.

The ABLE Act aims to change the tax code to allow for tax advantaged savings accounts for individuals with disabilities for certain expenses, like education, housing, and transportation.  Similar to existing “Section 529” education savings accounts, ABLE accounts would let families save for disability-related expenses on behalf of qualified beneficiaries with disabilities that will supplement, but not replace, benefits provided through the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources.  If properly managed, funds in the ABLE accounts would not jeopardize eligibility for critical federal benefits.  With full understanding of its features, individuals and families could use the ABLE accounts as another tool in planning for the lifetime needs of an individual with long term disabilities.  The version of the bill that passed the U.S. House of Representatives includes age limitations and a cap on contributions, added in July by the Committee on Ways and Means to reduce the costs of the bill.

What it is really like to be diagnosed with Autism Spectrum Disorder (ASD) as an adult

By Amy Goodman, Co-Director of the Autism NOW Center, at The Arc of the United States

Amy Goodman

Amy Goodman

In the recent past, Jerry Seinfeld had mentioned that he might be on the autism spectrum and then he had to backtrack and say he wasn’t on the spectrum. Because of a play he saw that was about autism, he thought he had some connection to it. That is all fine and dandy, but what about individuals who have been diagnosed with it as an adult and live with it every day. I just wanted to say that autism, ASD, or Asperger’s is nothing to be taken lightly. It is a developmental disability that affects how one thinks and it is the reactions that one has to the environment around them.

To me what it means to be diagnosed as an adult is this: It meant I finally found what I had been searching for, for more than 30 years. It meant closure of something looming over me. It meant satisfaction in me and my life in general. It was a relief to put a name to my idiosyncrasies and it gave me understanding and wisdom.

I was able to take responsibility for my life, make new plans on what I wanted to do with myself and I was able to put the pieces together and step through the next hurdle in my life. It gave me freedom to explore new opportunities and to see myself for who I am. I had a new found confidence and I realized I’m not different, that I do have a purpose and it also allowed me follow my dreams and go in a totally new direction.

It opened my eyes and washed away all my guilt that I had about myself and my abilities; therefore I was able to move forward with my new life. It gave me a whole new understanding of myself. The understanding was this that I am who I am and I am not bad, diseased, or broken. I have a name for all my challenges but that it is not a label, it is not bad, it just is. It is part of who I am and it will always be with me, but in the end does it really matter that I am on the spectrum? No, it does not. I am a human first and I have a name, Amy, autism or Asperger’s does not define me. So, I stopped obsessing over it, embraced it for what it is and I used my characteristics to help me to identify my next steps.

I took those next steps and I found that I am lovable, capable, and that I can do better than what others thought I was capable of doing. In fact, I have expanded my horizons and have even impressed myself with what I can do.

It means you know who you are, and it helped me to identify what I needed to do and by having this new found knowledge I was able to help others to see the light as well. Individuals with autism and Asperger’s are capable, bright, and able to achieve all of their dreams and then some if they just put their mind to it. Some individuals may need more help along the way than others, but don’t ever let anyone tell you “you can’t” because the reality is you can.

Dream big, live life to the fullest, and be happy. Do what you are meant to do. Being diagnosed as an adult gave me inspiration to do something, that something was go to graduate school and get my Master’s in Special Education with a minor in autism, so do something and make something of yourself. It can be done, if you have hope, happiness, and faith and you will succeed. Don’t give up, always remember to smile and remember this: No is not the answer. Yes is always the answer and what was the question? Oh I guess I forgot oh well it doesn’t matter because the answer will always be what you want it to be. That is yes, I can Yes, I will and Yes, I did. I conquered it and now that is all I have to say.

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.