All posts by AHG Trusts

VENDOR SPOTLIGHT – Nike’s LeBron 8 Flyease

In 2012, Matthew Walzer–a 16-year old born with cerebral palsy–sent the CEO of Nike, Mark Parker, a letter. Walzer requested the iconic company to devise a high-top basketball shoe that he could put on and tie himself.

To quote Matthew:

“Out of all the challenges I have overcome in my life, there is one that I am still trying to master, tying my shoes. Cerebral palsy stiffens the muscles in the body. As a result, I have flexibility in only one of my hands which makes it possible for me to tie my shoes.”

Matthew went on to explain that a) he is a big fan of Nike, and b) that he can only wear the high-top sneaker since he needed ankle support to walk. The letter can be viewed is re-printed in its entirety at the end of this post.Matthew Walzer and His LeBron Flyease 8 Sneakers

Inspired by Matthew’s letter, Nike designed a shoe that uses a wrap-around zipper-system sewn into a supportive strap. However, the process took three years and several prototypes. The Nike designers at first focused on keeping the shoe locked-down but after consulting with Matthew over Skype, the company learned that the difficulties extended to putting on the shoe as well.

The end-product is a sneaker delivering sport-level stability with a snug fit. And most important, the shoe can be put on with one hand. Renowned Nike designer Tobie Hatfield was on hand to present a pair of the LeBrons to Matthew when the sneaker was released in July 2015.The LeBron Flyease 8

As of this writing, limited quantities are available and reviews are generally positive although the sneakers tend to be sized on the smaller side and the foot runs slightly narrower than normal.  The sneaker retails for $130.

Matthew Walzer is now a sophomore at Florida Gulf Coast University…he wears his Flyease everywhere.

 

MATTHEW’S LETTER TO CEO MIKE PARKER OF NIKE

Dear Mr. Parker,

My name is Matthew Walzer. I am a high school student and will be a junior at Stoneman Douglas High School in Parkland, Florida.
I was born two months premature on October 19, 1995. I weighed only two pounds fourteen ounces, and because my lungs were fully not developed, my brain did not receive enough oxygen. As a result, I have a brain injury that caused me to have Cerebral Palsy. Fortunately, I am only affected physically, as others can be affected mentally, physically or both.

I have overcome many challenges in my life. Although doctors from the country’s top hospitals told my parents that I would never walk; and if I ever talked I would have a major lisp, these diagnoses proved to be false, I walk somewhat independently around my home and use crutches when I’m out or at school. I’ve also never had a speech problem. In fact, I am planning on attending college. I have attained a 3.9 grade point average (4 being the highest) and I am taking advanced placement classes. I have a strong passion for journalism and write for the sports and news sections of my high school newspaper. This year I personally received an award for writing one of the top high school sports columns in my county.

Out of all the challenges I have overcome in my life, there is one that I am still trying to master, tying my shoes. Cerebral palsy stiffens the muscles in the body. As a result I have flexibility in only one of my hands which makes it impossible for me to tie my shoes. My dream is to go to the college of my choice without having to worry about someone coming to tie my shoes everyday

I’ve worn Nike basketball shoes all my life. I can only wear this type of shoe because I need ankle support to walk. I am currently wearing the Lunar hyper gamer and LeBron Zoom Soldier 6’s. At 16 years old, I am able to completely dress myself, but my parents still have to tie my shoes. As a teenager who is striving to become totally self-sufficient, I find this extremely frustrating, and at times, embarrassing.
I know that Nike makes slip-ons, sandals and other types of shoes. However, I and many other physically challenged people are unable to wear them due to a lack of support. When I think of Nike, I think of one of America’s most innovative and forward thinking companies. Nike is always pushing the limits, making their shoes lighter, faster and stronger by using new materials, new designs and new technologies. This benefits people all around the world. Bill Bowerman said it best, “If you have a body you are an athlete.” I believe everyone, no matter what their physical, economic, or social circumstances may be, deserves to call themselves an athlete, and deserves to have a sense of freedom and independence.

If Nike would design and produce basketball and running shoes with moderate support and some kind of closure system that could be used by everyone, Nike could create a shoe line that attracts people that face the same physical challenges I did and still do, yet it could still be possible for anyone to wear them.
I am always searching the web for any type of shoe brand that makes athletic shoes that provide good support, are self-lacing and are made for everyday wear or for playing sports. It is disappointing that no athletic brand has taken the creative initiative to design and produce athletic shoes in this category. I hope that by bringing this to your attention, Nike will consider being the forerunner in producing athletic shoes that will make the difference in the quality of so many lives.

This letter is not a business proposal. I am simply making you aware that there is a need for this type of athletic shoe, a great need.

Thank you for taking the time to read this letter. No matter what challenges I’ve faced in my life, I’ve always strived to be independent, independence is for everyone.

Best Regards,
Matthew Walzer

VENDOR SPOTLIGHT – Stewart Home and School

StewartHomeandSchool_150803The Stewart Home and School is an impressive residential school in Franklin County, Kentucky for intellectually disabled individuals. At Arlington, we are always searching for creative ways in which our clients can prudently use their special needs pooled trust funds. More families and providers need to learn about this amazing facility.

The school was established in 1893 by Dr. John Q.A. Stewart and five generations later it is still being run by his descendants. We met CEO Barry Banker at a conference in late 2014, who is married to the great-grand daughter of Dr. Stewart and he gave us a tutorial.

Most special education programs end at age 21, and then adult settings focus on vocational options or daily living. Stewart Home and School has no age limitations for students and assigns each person a special education plan in addition to goals for vocational placement, daily living skills, and social maturity growth.  Says Sandra Bell,  the Director at Stewart:

“Our students thrive on structure and love to be busy.  They can’t initiate much themselves but look forward to being scheduled.  Our youngest is 13 years old and our oldest student is 86.”

The old bluegrass estate has residence halls, classrooms, a gymnasium, a pavilion, a fitness center, library, ball field, riding ring, stables, fishing ponds and extensive grounds. The setting is as lovely and complete as any rural college campus. Students at Stewart enjoy the common areas as much as their own private rooms.

The faculty of the school program has experience with the learning styles of people with autism, Down syndrome, Fragile X syndrome, Williams syndrome, as well as other intellectual disabilities. It is the objective of the school program to create successful learning experiences for all students and to consistently reinforce an individual’s enthusiastic motivation for participation and further growth.

While Stewart offers practical curricula — Math, Health and Wellness, Computer Skills, Reading, Science and Social Studies — it also offers a wide variety of electives. Some examples are: Fine Art, Music, Yoga, Leadership Class and Current Events.  One of the most popular courses has to do with daily living skills and money management.  Many families want to emphasize rudimentary math skills in conjunction with an understanding of day-to-day finances.  Each teacher is assigned to a group of students and tasked to create an individual plan.  Progress with an individual’s program is communicated to the person’s family throughout the semester.

The tuition cost is $3,020.00 per month and is the same for every student; this includes room and board. In addition the school instructs that $300.00 or so may be needed for incidentals.  There is no pre-established length of time for a person’s learning program.  While a semester lasts four months, parents can customize a learning program for as short as a week.  More information is available on the school’s website (www.stewarthome.com). 

We encourage clients that have adequate funds in their special needs pooled trust to look into the school as an education option or as an alternative to a vacation.

Social Security Weighs In Regarding End of Life Planning

Social Security is clear about resources for Supplemental Security Income or SSI. Nonetheless, there is confusion among providers, families, and direct support professionals when it comes to funding end-of-life plans. In April 2015, we attended a conference where the Administration’s SSI Program Expert, Mandy Stokes, spoke about this issue.

To review, individuals receiving SSI are allowed the following resources for burial:

• burial funds up to $1,500

• insurance or life insurance up to $1,500

• cemetery plots, headstones and funerary merchandise

None of these allowances are helpful to caregivers in truly funding a funeral plan; the average cost for a traditional funeral runs between $7,000 – $10,000 nationally. Fortunately, Social Security does suggest some solutions.

The SS encourages the purchase of a pre-paid funeral plan that is irrevocable.   In other words, there must be a purchase of goods and services; and this purchase must be made into an irrevocable trust or other irrevocable instrument.

Burial reserve accounts, CDs, and even irrevocable burial savings are considered resources if the balance is over $1,500. This is because these accounts have not been used to purchase anything. There is no pre-paid plan and the funds are not attached to the delivery of any goods and services to the individual.

The following slide was part of Ms. Stokes’s talk at the MidAtlantic Pooled Trust Conference on April 10, 2015. The first two bullet points concern a permissible expenditure from a special needs pooled trust.   The third bullet point and the last bullet point are particularly relevant to how Social Security prefers how an end-of-life plan is structured.SS

Finally, we unearthed an SSA newsletter written in 2002 that is still helpful. Even though the newsletter is nearly 13 years old, the information is still good and provides a useful guideline for families and DSPs. Access the newsletter copy here.

If you have further questions about this subject, please call (215) 672-1184.

ABLE Act Update: Public Comment Period

The ABLE (Achieving a Better Life Experience) Act was passed by the U.S. Senate and House of Representatives late last year and was signed into law by the President on December 19, 2014. Initially hailed as a victory for individuals with special needs, the process of regulating ABLE accounts goes on. What started out as a straightforward way to save and plan without the need for a lawyer, the regulatory process is resulting in a product with much complexity.

The ABLE creates an investment and savings instrument specifically for people with special needs. The law adapts the structure of a 529(b) plan–a tax free savings account used for specific purposes–for an ABLE account. The most popular and widely known 529(b) plan is used for tuition and education expenses. The original version of ABLE was much simpler and is qualitatively different than the new law’s final language.Able_Act

The above demonstrates the major rule changes that occurred during the legislative process. Other regulations are being promulgated now by the states as well as the U.S. Treasury, detailed below.

How an ABLE Account Operates
Family members and caregivers can open an ABLE account for a beneficiary. And only one ABLE account is permitted per beneficiary. The beneficiary must be a disabled person as defined by Title II or Title XVI of the Social Security Act or a person for whom a disability certification has been filed and approved by the Secretary of the Treasury. As stated above, the beneficiary must have been disabled before the age of 26.

The person opening the account on behalf of the beneficiary is the account’s owner and all contributions to the ABLE account must be in cash unless it is an in-kind rollover. Contributions are not deductible for federal income tax but they are deductible from state income tax and this amount will vary from state to state. Amounts in the account accumulate on a tax-deferred basis.

An ABLE account may not receive aggregate contributions during a taxable year in excess of the amount of $14,000. An ABLE account may not have more than $100,000; beneficiaries that have accounts exceeding $100,000 will have his/her SSI benefits suspended until the account falls back below that threshold.

Qualified expenses from an ABLE account are similar to those expenses allowed from a special needs trust or a special needs pooled trust. These include (but are not limited) to the following:

–transportation
–employment support
–health, prevention and wellness
–legal fees
–home improvements
–personal support services
–assistive technology
–oversight/monitoring
–burial expenses

Just like a Medicaid payback trust, ABLE accounts are required to repay federal and state governments from any funds remaining on beneficiary’s death for cost of benefits received.

Utility and Concerns
Potential of loss of SSI or Medicaid benefits to an individual is definitely a concern with respect to an ABLE account; parties wishing to establish such an account for a beneficiary should be thoroughly familiar with the final state and federal regulations. While there are caveats to these plans, they will likely be appealing for those that don’t want the cost of drafting a special needs trust and may also be helpful to augment a special needs trust, allowing a portion of the funds to grow tax-free.

Proposed rules for ABLE accounts were released by the IRS in late June and are undergoing a 90 day public comment period. So far, 22 states have enacted ABLE but it is likely the accounts won’t be available at all until the final regulations are issued and that appears to be sometime in late 2015.

Not Your Everyday Magic Show

Who doesn’t love a good magic show? Maybe it’s the funny magician, or the challenge of figuring out how exactly he managed to get out of that chained box in under three minutes. For magician Kevin Spencer, the magic he produces on stage has been adapted to be used for an audience utilizing magic for a different purpose. Hocus Focus, Kevin Spencer’s brain child helps children with disabilities learn new skills.

The idea is to incorporate magic tricks into the learning process; in order to garner the interest of the children and encourage them to develop their abilities in areas like fine motor skills, memory skills, planning, and communication. Magic seems to open up certain individuals with disabilities to a new talent. Practicing magic often requires an audience, this encourages children to develop their social and communication skills, while having fun at the same time. The program is used at various camps, one being The Flint Hills Summer Fun Camp, located in Manhattan, Kansas.

On the website of Hocus Focus there are many resources for both students and teachers who hope to learn more about what magic can do to enrich their lives. The teacher workshop is designed to teach both general and special education teachers how to teach through magic tricks with specific tools. For student workshops, it’s just the opposite. They’re shown how to create the illusions, then how to plan them out and implement them in front of an audience of their peers. For some individuals this can be a real turning point in how they communicate to others. Magic finds a way to touch their lives that other methods of teaching might not.

The Hocus Focus Project and the Healing of Magic program, both founded by Kevin Spencer, are registered with the National Board for Certification in Occupation Therapy and have the Approved Provider Status of the American Occupational Therapy Association. While recognized as an approved program, Healing of Magic, is still making modifications. Falling back on visual improvements isn’t what the team can rely on to move the Hocus Focus project forward, according to Spencer, it’s also taking down this information “empirically and statistically” in order to further develop it. The organization has recently partnered with Kansas State University, and build upon its achievements with more rigorous therapeutic data.

A Different Kind of Animal Therapy

The popular book and movie series which claimed so many fans is now taking on a new venture, where they’re helping a special group of individuals. You might recognize the names Hedwig and Errol, from the Harry Potter series, but those owls have yet to retire. Their new jobs these days involves taking trips to care homes and schools as a form of owl therapy in order to help children with physical and learning difficulties.

Although Hedwig is about to retire from outings next year, the others are still making the outings in order to help children with ADHD and Autism. Owls are trained at a young age, about three weeks old, in order to help support children with conditions like Autism and ADHD. Animal therapy is popular as a form of helping or assisting individuals with disabilities, and it’s shown to have a profound effect on them. Unlike other animals, however, owls seem to be a little more laid back because they don’t seek out attention, they just wait for it.

Owls like Hedwig and Errol currently reside at the Owl and Pussycat Center near Maud, Buchan-so it looks like it will be some time before they venture from Scotland, over to the United States. This is still an interesting take on animal therapy, and produces the same benefits as working with the typical animals like cats or dogs. The bonds they’re able to create with these owls allow the children to help build other bonds at home and in other areas of their lives.

The Center itself is a unique vision, built in a beautiful 30 acre historic wood and parkland environment. Families and groups are encouraged to visit the center, where they work with everyone in order to tailor the perfect visit. For the future the Owl and Pussycat Center is striving to create an interactive cat house for the therapy cats that acts as both a large enclosure and as suitable housing. The therapeutic environment will allow visitors to engage with the cats and will allow suitable access for any disabled clients.

Recently the Owl and Pussycat Center has introduced four new baby owls, who will soon be added to the forty other birds in residence.

Errol – a female Great Horned Owl, at the Owl and Pussycat Center
Hedwig from Harry Potter, at the Owl and Pussycat Center

End Of Life Planning For Individuals Of Special Needs

End of life planning for an individual with special needs is always a difficult consideration. And yet, it is a common topic regarding financial planning for a person receiving Supplemental Security Income (SSI) or medical assistance. However, such planning creates an opportunity to ensure a person with special needs is adequately prepared in such a way that does not impact standing with SSI or Medicaid.

The federal government (and most states) highly encourage an end of life plan for those receiving SSI as part of their overall financial plan. There are many alternatives available to family planners, but in a situation such as this—where benefits can be jeopardized if the wrong product is used—an irrevocable burial trust is probably the best instrument to choose.  Continue reading "End Of Life Planning For Individuals Of Special Needs"

Risks of Rising Wages

Rising wages? That doesn’t necessarily sound like a bad idea. Rising wages means more money, and more money is a good thing. Usually.

In early 2014, the Obama Administration added a new change to its executive order that would raise minimum wage for employees under federal contracts to $10.10. At the urging of disability advocacy groups, President Barack Obama made sure to include workers with disabilities in this new chance. Although the promise has yet to be realized, papers have been signed and changes are already being made for employees who had previously received  a federal minimum wage of $7.25. Minimum wage has always been a controversial issue and the debate about its economic efficacy continues.

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Cool Tips for Hot Days and Heat Stress

Anara Midgett has some fantastic ideas that she shares when it comes to keeping cool during these summer heat waves.

For those in Pennsylvania, the week of the Fourth of July may feel like the state was temporarily transported to the middle of the Sahara, but hopefully with some air conditioning to combat the heat. Preventing heat stress is especially important during this time of the year, and children are especially prone to so much heat. Although turning off the lights and hiding under a fan may seem like the best idea, there are some other options out there.

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