Three Essential Documents for Parents of Children with Special Needs

If your child has special needs, a standard estate plan will, trust, power of attorney, and health care proxy may not be adequate for your family. If your child will not be able to support herself or live independently as an adult, you need to make special provision for her in your estate plan. Here are three must-have documents:

Special Needs Trust. Instead of leaving your estate directly to a disabled child, the funds should be left in a specially-drafted trust for the child’s benefit. This will ensure that the funds are properly managed for the child’s lifetime. And provided that the trust is properly administered, the trust funds will not be countable, which helps to preserve your child’s eligibility for public benefits such as SSI and Medicaid.

Guardianship Nomination. Your will should include a guardianship nomination for all of your minor children. But when your child turns 18, she is considered to be an adult by law, even if her disabilities are very severe. Taking the time to select a guardian for your disabled child reduces stress and uncertainty for other family members after your death: the person you nominate as guardian will typically be given preference by the Court.

Letter of Intent. This is a non-binding document that captures vital information about your child for future caregivers and trustees. It can include information about your child’s routines, preferences, medical history, allergies, and so on. As parents, you have gathered a lifetimes worth of information about your child information that will be invaluable to your child’s future caregivers. You can ask your attorney to keep a copy of the Letter of Intent with your other estate planning documents.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

Home Ownership for People With Special Needs

People with special needs often require housing that accommodates their lifestyle. In many cases, group living facilities are called for, with the group environment providing stability and support. But in other cases, a person with special needs needs a very specific type of housing, designed particularly for her. Or, it may simply make sense for a person with special needs to have a place of her own. The rental market is clearly not equipped to provide the specific accommodations many individuals with special needs require. Fortunately, there are many ways to provide private housing for a person with special needs without compromising the majority of her means-based government benefits.

The first step when thinking about purchasing a home for a person with special needs is to decide whether the home should be held in trust or given to the resident to own in her own name. Since many people with special needs are perfectly capable of managing their own property, both Supplemental Security Income (SSI) and Medicaid regulations permit beneficiaries to own their own home without it counting as an asset for purposes of qualifying for or maintaining benefits (although there may be specific limits on the value of the home a beneficiary owns, which vary by state). Home ownership also allows increased access to credit, binds a person with special needs with their community, and provides a deep sense of self-worth.

But home ownership comes with many responsibilities, and frequently families choose to place a home into a special needs trust (SNT) instead of giving it to a person with special needs. Putting the home in a trust protects the home from a trust beneficiary’s creditors, who may be able to go after the equity in the home if it were owned by the beneficiary outright. Placing the home in trust also allows for flexibility if the home needs to be sold quickly, since the proceeds are retained by the trust. If a homeowner with special needs sells his own home, he would have to quickly purchase a new one for the same price or transfer the proceeds into a different kind of special needs trust (called a “first-party trust,” with a government payback provision) in order to maintain access to government benefits. Finally, some people with special needs, especially those suffering from mental illnesses that make it hard for them manage property or make them especially likely to be taken advantage of, should simply not own property in their own name.

Once the decision is made about who owns the home, the next step is determining how the home should be purchased. This decision depends on the finances of those buying the home and the government benefits being received by the resident. When a home is purchased outright (either by a trust or by a beneficiary’s family, who then gives the home to the resident), SSI rules dictate that the purchase counts as in-kind support and maintenance for the month of purchase only. Under the complicated restrictions, this means that an SSI beneficiary could lose up to about $244 (in 2013) of her benefit for one month. If the beneficiary’s monthly SSI award is reduced to zero by this reduction, she could lose her benefits, and accompanying health care, for the month of the gift. She could then regain eligibility at the conclusion of the month.

On the other hand, if the home is purchased through some combination of a down payment and a mortgage being paid by the trust or by family members, then the resident’s SSI award will be reduced by approximately $244 during each month that someone other than the beneficiary pays the mortgage. However, it does not matter if the mortgage payment is very large — the beneficiary still loses approximately $244 monthly. While this amount usually pales in comparison to the benefits of living in a home of one’s own, should a beneficiary receive an SSI award that is less than $244 a month before the purchase of the home, he will lose his SSI benefit because his award is reduced to zero by the in-kind mortgage payment. Because the mortgage payments will presumably be ongoing, this loss of SSI and health care benefits could be permanent, unlike the one-time loss of benefits if the home is purchased outright. Since other sources of income can also affect an SSI award, it is extremely important that families work with a qualified special needs planner to make sure that they are not going to compromise important benefits by purchasing the home.

After the home is purchased, maintenance becomes key. Under SSI regulations, payment of many household expenses for a beneficiary counts against her SSI benefit. This applies even if a trust owns the home the beneficiary is living in. For example, if the trust pays for the home’s water or electric bill, the SSA will deduct the same (up to?) $244 from a beneficiary’s award. So if a trust owns the home outright and manages to avoid paying a mortgage, the beneficiary can still incur a penalty should the trust pay for the upkeep of the home, and the same concerns regarding benefits apply. There is one important exception to these restrictions – a trust can pay for home improvements without penalty because these are not typical household expenses expected to be provided by a beneficiary.

The rules governing home ownership may seem complex, but the rewards are many and well worth exploring with a qualified special needs planner.

New Website for Mental Health Resources

The federal government has introduced a new resource for people struggling with mental illness. is a new website providing consumer-friendly content. At the website, you can find information about the signs of mental health problems, how individuals can seek help, and how communities can host conversations on mental health. The website’s social media channels will connect people to the latest information on the national mental health conversation. You can also share your story for others to learn from your experience. The website also includes videos featuring first-person narratives of individuals who have recovered from or managed mental health problems, or supported a friend or loved one struggling with these issues. Individuals contributing their stories to this initiative include: Glenn Close, Demi Lovato, John Saunders, and Cher.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

New Americans with Disabilities Act (ADA) Website

In the first re-design of the ADA website since 2002, the Department of Justice launched a redesigned ADA website, The new design incorporates improved navigation and usability features making it easier to find information on ADA technical assistance, enforcement, and regulations.   Additional features include information for returning service members with disabilities, service animals, and a sign up for an email list to receive the latest updates.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

Social Security Administration Revises Rules: Permits First-Party Trusts to Pay for Non-Beneficiary Travel in Some Cases

The Social Security Administration (SSA) has revised its Program Operations Manual System (POMS) to allow first-party trusts to pay for travel expenses incurred by non-beneficiaries in limited cases. In addition, the revised POMS clarifies the rule that payment of some administrative expenses upon early termination of the trust or otherwise, including trustee fees, will not violate the sole benefit rule.

A controversy surrounding trusts and travel expenses began last spring, when the SSA added two examples to POMS Section 1120.201. The new wording stated that trusts that permit a trustee to reimburse a beneficiary’s family for expenses incurred in visiting the beneficiary would violate the “sole benefit rule” and would therefore not qualify as exempt resources.

The SSA removed the offending examples after attorneys and other advocates objected, but the agency warned that it would revisit the issue. The latest revisions, announced in a Policy Transmittal and effective May 15, 2013, represent a compromise position.

According to the updated POMS Section 1120.201.F.2, the general rule is that a trust is established for the sole benefit of an individual “if the trust benefits no one but that individual, whether at the time the trust is established or at any time for the remainder of the individual’s life.” However, the revised POMS establishes two exceptions, one for third-party payments and one for administrative expenses.

The new rule states that payments do not violate the sole benefit rule if they are to third parties for goods or services received by the beneficiary, payments of third-party travel expenses “which are necessary in order for the trust beneficiary to obtain medical treatment,” or payments that allow a third party to “visit a trust beneficiary who resides in an institution, nursing home, or other long-term care facility (e.g., group homes and assisted living facilities) or other supported living arrangement in which a non-family member or entity is being paid to provide or oversee the individuals living arrangement.” However, [t]he travel must be for the purpose of ensuring the safety and/or medical well-being of the individual.”

The new POMS section also provides a 90-day safe harbor period for revision of a trust that was previously judged to be an exempt resource but has run afoul of the new travel provisions. The 90-day period does not start running until the beneficiary or his representative payee is informed that the trust violates the new rules.

Revised POMS Section 1120.201.F.2.c, which is incorporated into several additional sections, including 1120.199 (the early termination rules) and 1120.203, makes it clear that payments for “reasonable compensation for a trustee(s) to manage the trust, as well as reasonable costs associated with investment, legal or other services rendered on behalf of the individual with regard to the trust” do not violate the sole benefit rule.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

Federal Web Site Links to Programs and Services for People With Disabilities

There are so many programs and services available for people with disabilities that it can make your head spin. Fortunately, the federal government has created a Web site that collects information about a wide variety of state and federal resources in one place.

The U.S. Department of Labor’s site is a one-stop source of government information relevant to people with disabilities, their families, employers, and service providers. Visitors choose from a number of broad categories — including housing, health, transportation, and employment — and receive a list of links to state and federal resources.

In addition to assembling all of the links in one place, also allows users to sort the tremendous amount of data in a variety of helpful ways. For instance, visitors can narrow their searches by target audience or by curated sub-topics. The Web site also recommends sites or organizations that do a particularly good job. On top of all of these resources, contains an up-to-date news feed describing various events and stories of interest to people with disabilities and their families.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

Acedemy of Special Needs Planners Annual Meeting

I recently attended and spoke at the 7th Annual Academy of Special Needs Planners in Austin, Texas. Each year that I attend, I come back with more ideas to improve the trusts that I write and to solve problems faced by our trustees and beneficiaries.

I have been serving on the Model Trust Drafting Committee for the past two years and was part of a panel that presented the model 3rd Party Special Needs Trust to attorneys from all across the United States. Our program was called “The Anatomy of Drafting Special Needs Trusts.” Our committee will resume our efforts in the coming year to draft a Model 1st Party special Needs Trust.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

Housing Option For Disabled Adults

I came across the following article by  Bonnie Miller Rubin in the Chicago Tribune.

Baruch and Joyce Schur were out of options. They couldn’t find anywhere for their physically and intellectually disabled 26-year-old son to live, at least nowhere that met their criteria or didn’t have a years-long waiting list. The 55-year-old couple made plans to move out of state. Uprooting themselves from their native Chicago, leaving friends and a family business, was the only way to give Josh a home — not an institution — that offered independence, a kosher kitchen and a sense of community before his parents became too elderly to care for him. But then the Schurs took an even bolder step. They joined forces with five other families in similar circumstances to do what government could not: They created something better.

They become a nonprofit, raised their own funds, bought their own property, hired a design team and a social services agency to staff a home. Last month, six young men — with cerebral palsy, autism and Down syndrome — moved into a red-brick Georgian on a quiet block in the same Chicago neighborhood, Rogers Park, where they grew up.

Other parent-empowered groups are also rolling up their sleeves, joining this quiet crusade. A Glenview, Ill., couple has partnered with Rush University Medical Center to build housing for young adults with autism in Chicago’s West Loop. In Wheaton, Ill., another family group collaborated with their church for a similar project.

In a previous era, children such as Josh would have been institutionalized. Today, because of medical advances and sweeping public policy changes, children with disabilities are not just surviving but thriving into adulthood. And no one knows what to do with them all.

‘Look at other sustainable models’

There are 1 million to 1.5 million Americans with autism alone, 80 percent of whom are younger than 22, said the Centers for Disease Control and Prevention. “The statistics are frightening,” said Tony Paulauski of the Arc of Illinois, an advocacy organization. “What’s going to happen to all these folks? We are bracing ourselves for a demographic wave and we are totally unprepared.”

These young adults were born into a very different world than earlier generations. Parents started seeing their offspring for what they could do — not just what they couldn’t.

They pushed clinicians for more physical, occupational and speech therapy and pushed lawmakers toward mainstreaming policies. No longer hidden, these youngsters were now woven into society, participating in school plays, soccer and Boy Scouts.

Then, at age 22, most publicly funded services end. As the kids get older, the journey gets lonelier. Some 80 percent of young adults with autism ages 19 to 30 still live at home, said a 2008 Easter Seals study.

“People see how futile the situation is,” Paulauski said. “And as government continues to shrink, it becomes even more important that families look at other sustainable models.”

The Schurs, who have two other sons, were being consumed by the day-to-day challenges of raising a child with cerebral palsy. The doctor visits, the financial pressures, the physical demands all exact a steep toll. For example, Joyce Schur would call her husband at work when Josh needed to go to the bathroom because she could no longer lift her 130-pound son from his wheelchair.

“I watched these kids grow up, and I couldn’t believe that we had nothing for them,” said Shana Erenberg, a special education consultant. “I was embarrassed for my state.”

So when Baruch Schur called Erenberg in 2009 to say they had bought a house in New York that offered more and better services, “it was the last straw,” she said. For Schur, it was the only solution. “If we stayed in Illinois, we had two choices: A nursing home or a nursing home,” he said.

That night, Erenberg set out to create a home that offered safety, friendship, kosher food, activities and interiors that said “Pottery Barn” more than “state facility.” She reached out to Alderman Debra Silverstein and, along with Baruch Schur, they identified six potential residents and took their proposal to the other parents, who didn’t have a lot of faith such a vision would become a reality, Erenberg said. “They told us: ‘We’re exhausted.’ And we said, ‘Let us carry the ball for a while.'”

That’s how the Libenu Foundation — Hebrew for “our heart” — gained traction. Parents and other volunteers scoured the nation for models, then bought a three-bedroom home, which cost $400,000. They poured in another $600,000 to make it seven bedrooms and handicapped-accessible.

‘This is a blessing’

Each family made a financial commitment — although they declined to give an exact amount — and held fundraisers, taking their story to anyone who would listen. Services such as aides, transportation, recreation and personal care are managed by Clearbrook, an Arlington Heights, Ill.-based agency, and are paid for, in part, with public funding.

Many siblings of disabled adults find themselves thrust into the role of caregiver after the death of a parent, said Jan Doyle, who co-founded the nonprofit Center for Independent Futures. “They have their own jobs, children, lives and they call up and ask, ‘What do we do?'”

Joan Katz, one of the Libenu parents, was determined that would not happen. Her son, Jacob Mosbacher, who has Down syndrome, has been the beneficiary of years of enrichment and learning. At 25, he is an artist who has displayed at city galleries and has his own website. “As a parent, this is a blessing; but for siblings, it’s a double blessing,” she said. “And for Jacob? It means he has a life.”

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.


Spread the Word to End the Word

When they were originally introduced, the terms “mental retardation” or “mentally retarded” were medical terms with a specifically clinical connotation; however, the pejorative forms, “retard” and “retarded” have been used widely in today’s society to degrade and insult people with intellectual disabilities. Additionally, when “retard” and “retarded” are used as synonyms for “dumb” or “stupid” by people without disabilities, it only reinforces painful stereotypes of people with intellectual disabilities being less valued members of humanity.

 Spread the Word to End the Word is an ongoing effort by Special Olympics, Best Buddies and R-Word, Spread the Word to End the Word to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the R-word.

The campaign, created by youth, is intended to engage schools organizations and communities to rally and pledge their support and to promote the inclusion and acceptance of people with intellectual and developmental disabilities.

The official annual day of awareness is held the first Wednesday of every March. While most activities are centered on or near that annual day in March, people everywhere can help spread the word throughout their communities and schools year-round thru pledge drives, youth rallies and online activation.

Spread the Word to End the Word was founded by college students Soeren Palumbo (Notre Dame 2011) and Tim Shriver (Yale 2011) in 2009, and continues to be led by passionate young people, Special Olympics athletes and Best Buddies participants across the United States and in many other parts of the world.

Respectful and inclusive language is essential to the movement for the dignity and humanity of people with intellectual disabilities.  However, much of society does not recognize the hurtful, dehumanizing and exclusive effects of the word “retard(ed).”

If you would like to learn how you can Spread the Word to End the Word click here.

“What’s wrong with “retard”? I can only tell you what it means to me and people like me when we hear it. It means that the rest of you are excluding us from your group. We are something that is not like you and something that none of you would ever want to be. We are something outside the “in” group. We are someone that is not your kind. I want you to know that it hurts to be left out here, alone.” – Joseph Franklin Stephens, Special Olympics Virginia athlete and Global Messenger 

“Words matter. People don’t need to scoff at others to make a point. Everyone has a gift and the world would be better off if we recognized it.” – Tim Shriver, CEO of Special Olympics

“The word retard is considered hate speech because it offends people with intellectual and developmental disabilities as well as the people that care for and support them. It alienates and excludes them. It also emphasizes the negative stereotypes surrounding people with intellectual and developmental disabilities; the common belief that people with intellectual and developmental disabilities should be segregated, hidden away from society, which, in my opinion, is really old fashioned.” – Karleigh Jones, Special Olympics New Zealand athlete

“When you say the “R” word it makes people feel bad and it hurts my feelings and I don’t want to hear you guys say it. Instead, you can call me a leader, a hero, or a human being, but please don’t call me the “R” word.” – Dony Knight, Special Olympics Oregon athlete

“Because the word has become a casual description of anything negative or flawed, ‘retarded’ is no longer considered an appropriate way to describe people with intellectual disabilities. And any use of the word, even when used as slang and not intended to be offensive, is hurtful – because it will always be associated with people who have disabilities.” – Sara Mitton, Board Member, Treasure Valley Down Syndrome Association

“It hurts and scares me when I am the only person with intellectual disabilities on the bus and young people start making “retard” jokes or references. Please put yourself on that bus and fill the bus with people who are different from you. Imagine that they start making jokes using a term that describes you. It hurts and it is scary.” – Joseph Franklin Stephens, Special Olympics Virginia athlete and Global Messenger

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.

Benefit Finder is a federal government website for comprehensive information on disability programs and services in communities nationwide. The site links to more than 14,000 resources from federal, state and local government agencies; academic institutions; and nonprofit organizations. You can find answers to questions about everything from Social Security benefits to employment to affordable and accessible housing. has a website called to help you determine which benefits you may be eligible for and how to apply for them. Recently, they launched a new tool to assist you on your path to finding and applying for government benefits. The website has launched the YouTube channel. If you already have a YouTube account, you can subscribe to the YouTube channel by clicking the “Subscribe” button at the top of the channel page. Subscribing allows you to receive notifications when new videos are posted and provides an easy way to quickly access your favorite videos. Even if you do not have a YouTube account, you can still view the videos about the site and its features at any time.

The YouTube channel currently showcases a self-help video about the site’s confidential prescreening tool, the Benefit Finder. The Benefit Finder Tutorial video is a step-by-step visual guide designed to help you better understand how the Benefit Finder works. This short tutorial also aims to help answer common questions you may have while using the Benefit Finder tool. To turn on the closed captioning, or to use translation, please click on the “CC” icon below the video to adjust your settings.

* The information contained in this Blog is intended for general information and educational purposes only and does not constitute legal advice or an opinion of counsel.