Do You Know the Health Conditions Commonly Associated with Down Syndrome?

peopleOne in about every 700 babies is born with Down syndrome. Most people with Down syndrome are able to live a full and healthy life, with many individuals living well into their 50’s and some even their 60’s. Our knowledge of health conditions that are commonly associated with Down syndrome has increased drastically over the years, providing these individuals that are living longer with improved health care and more comfort. Not all individuals with Down syndrome will have or develop these conditions, and many can live their entire life without any. However, being aware of these conditions and getting yearly preventative check-ups will help to improve quality of live and prevent smaller issues from developing into larger and more complicated ones.

A few of the health issues that are frequently seen in individuals with Down syndrome include:

  1. Heart Defects – Congenital heart disease is found in about half of babies born with Down syndrome. Ensuring that proper steps are taken when they are an infant—such as getting an echocardiogram and follow-up evaluations—will help to determine if a defect is present and what steps will need to be taken for treatment. Yearly check-ups are recommended to make sure no further problems exist.
  2. Thyroid Disorders – Symptoms of thyroid disorders in infants are very similar to those symptoms commonly associated with Down syndrome, so these cues can easily be overlooked. Babies born with Down syndrome are recommended to have their thyroid checked at birth, 6 months, 1 year of age, and annually every year after. Hypothyroidism, the most common disorder found, can develop at any age and can lead to weight gain, fatigue, and constipation. Effective treatment can easily be prescribed though once diagnosed.
  3. Hearing Issues – About 70% of individuals with Down syndrome will experience some hearing loss. Early detection of hearing loss is essential, as children mainly learn to speak from hearing words and sounds around them. Poor hearing could affect speech development, learning, and social skills or cues. Excessive ear wax build-up is common in adults and could be confused with behavior issues such as stubbornness or confusion.
  4. Vision Impairments – Poor vision can have an effect on an individual’s balance and increase the risk of falling. Luckily though, most eye issues are able to be fixed with corrective lenses. Other common eye problems that can occur include cataracts (clouding of the eyes), strabismus, crossed eyes, and rapid involuntary eye movements. Eye exams are recommended to start annually when individuals are infants.
  5. Infections – Individuals with Down syndrome have a much higher risk of developing an infection, especially respiratory infections. Defects in the immune system make it harder to fight off bacteria and viruses. Any infection should be treated immediately and monitored thereafter to ensure it does not get any worse. Obtaining all recommended immunizations will help to prevent and reduce infections.

Even though not all individuals with Down syndrome will encounter all of these issues, it’s good to be mindful of them and take precautions to get yearly check-ups to help prevent any future health concerns. Learn more about how to stay healthy and active through The Arc’s HealthMeet project.

Is Justice Delayed Really Justice?

By Leigh Ann Davis – Program Manager, Justice Initiatives

Bob-Martha-Richard-Inside-Perske-home[1]

Bob Perske, Martha Perske and Richard Lapointe at the Perske’s home days after Richard’s release on bond in April.

If you had been in prison since 1987 for a crime you didn’t do – missing nearly three decades of your life – and then were released and had charges dismissed, would you believe you had received justice? I would not.

While attending The Arc’s national convention in Indianapolis this month, I received news that so many of us had been waiting for: charges against Richard Lapointe, a man with intellectual disability who had been in prison since 1987 until April of this year for a rape and murder he did not commit, were dismissed and he was finally a free man! After a lengthy, coercive interview with police, Lapointe falsely confessed to the crime, which was committed against his then-wife’s grandmother. Since then, his legal team and advocates (including advocates within The Arc at the local, state and national levels) have been fighting for his case to be reconsidered because of his intellectual disability.

In the spring, the Connecticut state Supreme Court raised concerns about the circumstances of the interrogation and the truthfulness of the alleged confessions, and ordered that he be released or given a new trial. Then prosecutors agreed not to pursue the means to keep him in prison while they decided whether to challenge the state Supreme Court decision. Richard lived in an unbearable stage of limbo – until last Friday, when charges were formally dropped.

“Freedom is when I can walk down the street and wave to somebody and not worry that, that they’re gonna think I’m trying to be trouble,” Lapointe said in the Hartford Courant, June 15, 2015

The decades of advocacy it took to right this monumental wrong was thanks to dedicated advocates who never gave up hope that Richard would one day be a free man. Robert Perske founded The Friends of Richard Lapointe more than 20 years ago when, during Lapointe’s first week in court, he noticed that not one person was sitting on Richard’s side of the courtroom – except Perske. By the next Monday morning, some 30 people sat behind Richard in court thanks to Perske’s quick and persuasive advocacy work. Since that time, many have joined the cause and The Friends of Richard Lapointe was born. Perske is a legendary giant in the field of false confessions of people with intellectual disabilities. He is also a respected author, advocate and long-time supporter of The Arc. He compiled a list of people with intellectual disabilities who gave false confessions in order to document just how often false confessions are coerced out of people with intellectual disabilities, and to show how devastating the outcome can be. Those accused of crimes they did not commit often face the greatest injustice of all, some losing their lives when coerced into giving false confessions. Since 1983, over 60 people with intellectual disabilities have been executed based on false confessions. Lapointe, who became one of Perske’s closest friends throughout this ordeal, was on Perske’s list – until last Friday.
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Divorce, Financial Security and the Son or Daughter with I/DD

By Craig C. Reaves, CELA, Special Needs Alliance

SNA LOGO trademarkedThe family disruption that often accompanies divorce is compounded when a son or daughter with disabilities is involved. Divorce attorneys are often unfamiliar with the nuances of how public benefits interact with child support, alimony, and custody. Laws differ dramatically by state and are in flux in some states, as legislators and the courts deal with a growing need to address the special circumstances that arise when the divorce involves a son or daughter with disabilities.

Extra Expense

Child support charts simply don’t account for the extra financial requirements of many children with disabilities. The costs of healthcare, therapies, equipment, special diets, support services, transportation and more are often difficult to accurately calculate. To complicate matters, parents sometimes disagree about a child’s abilities and disabilities, which can have a significant effect on divorce negotiations. Also, alimony calculations rarely take into account any drop in the custodial parent’s income due to caregiving demands, as well as the cost of needed respite time.

In addition, since children with intellectual and developmental disabilities may require lifelong financial support, their needs throughout adulthood should be evaluated. While relatively few states have laws on the books requiring a parent to support an adult son or daughter, many courts that have considered the question hold parents responsible for supporting adult offspring whose disabilities make ongoing financial support necessary. It is not the disability that is the determining factor, but the son’s or daughter’s ongoing need for financial support that results from the disability. Also, unless the state law clearly imposes a duty to support an adult offspring, many courts will not order support payments unless the court is asked to do so prior to the child becoming emancipated. On the other hand, some states explicitly end parental responsibility at a set age, such as 18, 19 or 21, whether or not the child has a disability.

Whatever the situation in your state, the issue of continuing support into adulthood of a son or daughter who has a disability should be addressed at the time of divorce, since making changes later can be difficult. Even in states with no-responsibility statutes, courts will uphold support commitments contained in the divorce decree.

That said, the son’s or daughter’s lifestyle during adulthood may need to be considered. What sort of education will be pursued after high school? What type of job is he or she interested in? What skills should he or she be developing? Where will he or she live? What will his or her support needs be? And so on.

How Public Benefits Are Affected by Child Support and What Can Be Done about It

While the family’s income may have previously been too high for a minor child with disabilities to receive SSI (Supplemental Security Income) or Medicaid, that could change if the custodial parent is unable to work outside the home due to full-time caregiving responsibilities. Any SSI received by a child with a disability will not be taken into account when courts establish child support obligations. On the other hand, many courts will factor in the child’s Social Security benefits if they are being paid because of the non-custodial parent’s work record.

While a child is a minor, child support payments are made to the custodial parent. This may result in family income that is too high for the child to qualify for needs-based public assistance. However, once the son or daughter reaches the age of majority, 18 in most states, any child support payments are deemed to be the child’s income, even if still paid to the custodial parent. At the very least, this will reduce, if not eliminate, the child’s potential SSI income and may create issues regarding Medicaid eligibility.

This can be avoided if the support is paid into a self-settled special needs trust (SNT) that is established for the son’s or daughter’s benefit. By doing so, the payments will be income to the trust instead of the offspring’s and will not reduce their SSI. While this type of SNT can be established by the parent or grandparent, in order for the support payment to avoid being treated as the son’s or daughter’s income, there must be an order from a court requiring that the support payments be made into the self-settled SNT.

If paying support payments to a self-settled SNT would best serve the child when he or she becomes an adult, the trust can be established at the time of divorce. The court should then order that support payments be paid into the SNT once the son or daughter reaches the age of majority. The court order can be made either at the time the original divorce decree is entered or later, but it is best that it be made before the child becomes emancipated.

Be aware that using an SNT to pay for certain expenses—such as food or shelter—will reduce SSI benefits. Even if the non-custodial parent pays directly for such items, including utilities, SSI will be negatively affected.

Clearly, the financial implications of public benefits for divorce and child support are complex and outside the experience of many divorce attorneys. For the best results, consulting an attorney who understands special needs planning is important to ensuring that all relevant factors are considered.

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.

More Veggies and Fruits Please!

fruitObesity has been a large problem in our country for several years now, and affects both people with and without intellectual disabilities (ID). Through The Arc’s HealthMeet project, which has conducted health assessments on over 1,000 individuals with ID in its first two years, 35% were in the obese category and 11% were in the extremely obese category.

According to ChooseMyPlate.Gov, half of your meals should be fruits and vegetables. While this sounds easy, many people do not meet these goals in their daily eating habits. Fruits and vegetables provide a lot of vitamins and nutrients—vitamin A, C, potassium, and iron to name a few—that our bodies need daily. They are also naturally low in fat and will help to fill you up without all the additional calories, so feel free to eat as much of them as you’d like! Just be careful about extra toppings that you may add on. For example, make sure not to add an excessive amount of butter or cheese to things like broccoli or brussel sprouts, and use salt sparingly.

Below are a few easy ways to help increase your fruit and vegetable consumption throughout the day.

  1. Smoothies: make them in the morning for breakfast or as an after-dinner treat. You can use a variety of fruit and even add in some vegetables as well. Add a little kale or another green leafy vegetable in a smoothie to help increase nutrients even more.
  2. Fruit/Veggie Appetizers: most people come to the dinner table ready to eat. Have some cut up carrots, peppers and hummus out for individuals to snack on when waiting for dinner. Having some time to snack on the appetize will allow that food to digest in their bodies before dinner and will help to fill them up on healthier options so that they will be less likely to go back for seconds once they have finished their plate. When individuals eat too fast their bodies don’t have time to realize that they are full. Spreading the meal out with a healthy appetize of vegetables in the beginning allows for more time for the body to recognize it’s getting full and send these signals to the brain.
  3. Disguise them!: Add slices of fruits and vegetables to items you wouldn’t usually add them in or just haven’t before. Finely chop zucchini, squash, or eggplant and add to spaghetti sauce – they won’t even notice! Salads and sandwiches can be enriched with slices of apples, grapes, kale, cucumbers, carrots, peppers, and more.
  4. Drink them: Fruit juice can be a great way to get easily add in some extra fruits. However, make sure that it is “100% fruit juice” as other juice drinks can use a lot of extra sugars to sweeten and flavor them.

Making sure to offer a variety of fruit and vegetables to choose from will help determine what kind of foods individuals like. Buying fruit fresh is a great idea, but fruit that is frozen or canned will still provide a lot of needed vitamins and may be easier to store and prepare. Make sure canned/frozen fruit doesn’t use any extra sugars or syrups added to preserve it, as that can add a lot of extra calories. Try cooking vegetables in an array of different ways – raw, steamed, baked, grilled, etc. An individual might not like carrots because they are too hard to chew, but if you steam them and make them softer it could be something that they enjoy eating.

Check out The Arc’s HealthMeet webinars for more information about nutrition and eating healthy.

Who Should Be the Trustee of a Special Needs Trust?

By Rebecca A. Hajosy, J.D., Special Needs Alliance

SNA LOGO trademarkedProviding long- term financial support or supplementation to a loved one with disabilities requires careful planning. One commonly used tool is the special needs trust (SNT), created to protect assets, while maintaining eligibility for means-tested government benefits. A critically important part of the trust process is selection of a trustee, who will make decisions regarding the investments, distributions and all other aspects of managing the trust for the benefit of an individual with disabilities.

Of course, the selected trustee should be honest, dependable and organized, but typically, someone is needed to play more than a purely administrative role. Parents should write a separate “letter of intent” to help guide the trustee in understanding how the SNT should enhance their son’s or daughter’s quality of life. It should describe the beneficiary’s goals, needs, routines, and preferences for current and future support. It should also include advice about interacting with, and advocating for, the individual. It’s usually a good idea to choose someone located nearby to facilitate the trustee’s active involvement.

Family members are often chosen for the trustee role, but before making a selection, the following should be factored in:

  • This is a long-term commitment, and the trustee should be willing and able to serve for years to come. If an older relative is being considered, it would be wise to also appoint a younger “successor” trustee so that the trust can be administered without interruption.
  • Government entitlement programs, such as Supplemental Security Income (SSI), Medicaid and HUD Housing, have detailed requirements regarding SNT distributions. The trustee must be familiar with the rules pertaining to the programs in which the beneficiary participates. A wrong move can disqualify them for benefits, result in overpayments or even expose the trustee to legal liability. In order to advocate for the benefits to which the beneficiary is entitled, the trustee must be knowledgeable concerning a wide range of often-changing laws and regulations.
  • The trustee has a fiduciary responsibility to manage the trust’s assets in the best interests of beneficiaries. The trustee should either have investing experience or hire someone who does, since improper handling could, again, lead to legal liability.
  • In some situations, having a family member serve as trustee could change─ and even damage –the individual’s relationship with the beneficiary.
  • Even when a family member serves as trustee, it’s common for them to be paid a fee, given the amount of work involved. Family members usually charge less, though, than corporate trustees, banks, accountants and lawyers.

Due to the complexity of administering an SNT, family members may prefer to act as co-trustees, alongside professionals. While appointing co-trustees has advantages, in most cases, they must agree on all actions to be undertaken, including the signing of checks. This can become burdensome, and even result in gridlock. If a family member acts as sole trustee, they may choose to regularly consult a special needs attorney or financial advisor to supplement their own skills.

Another way to involve family members is to name one or more of them as “trust protector.” In that capacity, while not managing the trust, they can require accountings and investigate actions. They also usually have the authority to remove and appoint trustees.

There’s a lot to consider when managing an SNT, and the degree to which it contributes to an individual’s well-being rests largely with the trustee. Choose carefully.

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.

Impact of Poor Vision

Screen Shot 2015-08-18 at 1.07.02 PMVision is very important to maintaining the quality of an individual’s life. Individuals with intellectual disabilities (ID) are more at risk for having issues associated with vision than the general population. Research has shown that individuals with ID are less inclined to to go to routine physician visits for check-ups. The same applies for receiving their biennial eye check-up. Individuals who are at risk or have a history of poor vision in their family should go more frequently for check-ups. Some factors that can affect vision—putting an individual at risk—are: diabetes, high blood pressure, specific medications with side effects to vision, or previous injuries to the eye. Obesity, which often leads to diabetes and high blood pressure, is already a very prominent issue among individuals with ID, putting them in a potential at-risk category.

Individuals who are non-verbal might not to be able to express to their family or caregiver that their vision has changed and that they may now require corrective lenses, which is why it’s so important to continually get check-ups. Individuals may also be used to having poor eyesight and not know that their vision can be corrected to see clearer. So, it’s important to continually go back to the doctor for check-ups to ensure their vision is still accurate. Physicians should have adaptive eye charts that include pictures, shapes, or a rotating “E” (individuals can point to which side the opening is on the E) instead of letters if the individual is not literate or non-verbal.

Correcting poor vision will help individuals to be more independent. They might feel more comfortable going places or doing things on their own where they can now clearly see signs, directions, and other markers around them. It will also help with balance to have a clear view of the floor and things around them, and with depth perception to reduce falls. Being able to see others clearly could even improve their social skills by allowing them to identify people better and feel more comfortable being in social settings around others.

Ensure that individuals you care for receive an eye exam every 2 years. If glasses are required, there are organizations, such as the Lion Club, which help to recycle old prescription eyeglasses and give them out to those that can’t afford them. To learn more about the health of individuals with ID, check out The Arc’s HealthMeet project website.

Happy 80th Birthday Social Security!

This week, The Arc celebrates the 80th anniversary of our nation’s Social Security system.

Signed into law by President Franklin Delano Roosevelt on August 14, 1935, Social Security improves our lives in so many ways. It provides basic economic security for workers and their families – including children and spouses with disabilities – when a worker retires, dies, or acquires a significant, qualifying disability. It helps people with disabilities who work to enjoy a secure retirement. And it provides access to health insurance through Medicare, enabling many people with disabilities to get the health care they need.

Social Security insures nearly all Americans, or an estimated 165 million workers. Its protections are hard to come by anywhere else: roughly 7 in 10 civilian workers have no long-term disability insurance, half have no private pension, and one in three has no savings set aside for retirement.

It’s hard to imagine what life would be like without Social Security. Benefits average just over $40 per day, but lift about 22 million Americans out of poverty. For most beneficiaries, that $40 per day is most or all of what they have to get by. Many people with disabilities tell us that even a small cut in their Social Security benefits would mean facing terrible choices, like whether to take a prescribed medication or buy groceries.

Social Security has never missed a payment since 1935. Workers pay for Social Security, and count on it being there when they and their families need it. The Arc knows how important it is to sustain Social Security’s record of success, and keep our nation’s promise to today’s workers and beneficiaries, and for generations to come.

Over the last year, The Arc has been on the front lines, defending our Social Security lifeline against shocking attacks and speaking out against harmful benefit cuts. We’re fighting to prevent a devastating 20% across-the-board cut in Social Security disability benefits at the end of 2016. And we offer many recommendations for strengthening Social Security so that the system works better for people with disabilities and stays financially strong for decades to come.

Please join us in making sure this vital system is there for people with I/DD and their families!

SSDI: Sustaining Our Lifeline for Decades to Come!

As The Arc celebrates Social Security’s 80th anniversary this August, we kick off the month by marking the 59th anniversary of Social Security Disability Insurance (SSDI). Signed into law on August 1, 1956 by President Dwight D. Eisenhower, SSDI insures nearly all American workers and their families in the event of life-changing disabilities. Without SSDI, many families with members with significant disabilities – including people with intellectual and developmental disabilities (I/DD) – would face financial dire straits and often unthinkable choices.

Our Social Security system has withstood the test of time. But this bedrock of our nation’s economy requires periodic maintenance to remain strong.

Today, our SSDI lifeline stands at great risk. Here are three facts that people with I/DD, their families, and friends need to know about SSDI and the action that Congress must take:

  1. Congress must act by the end of 2016 to prevent a 20% across-the-board cut in SSDI benefits.

Congress from time to time needs to adjust Social Security’s finances to account for population and economic shifts. The need to replenish the Social Security’s Disability Insurance (DI) fund in 2016 to account for long-term trends, such as an older workforce now in its disability-prone years, has been expected for several decades. Without Congressional action, at the end of 2016 the DI fund’s reserves will be depleted, leaving only incoming payroll contributions to pay for benefits. As a result, unless Congress acts, SSDI beneficiaries will face benefit cuts of 20% at the end of 2016.

  1. Two ready, sensible solutions can prevent SSDI benefit cuts: merging Social Security’s trust funds, or ‘reallocation”.

Over the last 5 decades, Congress has repeatedly, on a bipartisan basis, used a simple, commonsense solution to address shortfalls in either of Social Security’s two funds (the Old-Age and Survivors Insurance or OASI fund, and the DI fund). A temporary shift to direct more Social Security revenues to the DI fund – called “reallocation” — will extend the solvency of the DI fund for almost two decades, through 2034. Congress has made similar shifts 11 times in the past, about equally increasing the percentage going into one fund or the other. Reallocation does not require any new taxes. Additionally, the solvency of the overall Social Security system stays the same, with the combined funds remaining fully solvent through 2034.

Another approach – proposed in the One Social Security Act (H.R. 3150) – would merge Social Security’s OASI and DI funds into a single Social Security Trust Fund. This would align Social Security’s finances with the program’s reality: an integrated system of retirement, life, and disability insurance paid for by a single payroll tax. It will eliminate needless crisis points, such as the pending 2016 depletion of the DI fund. And it will better enable Congress to consider the system as a whole to develop responsible ways to strengthen benefits and finances over the long-term, to ensure that Social Security will be there for generations to come.

  1. Congress can secure SSDI’s finances while rejecting harmful approaches.

Unsurprisingly, Americans overwhelmingly support preserving and strengthening Social Security, and oppose benefit cuts. Fortunately, Congress can secure SSDI’s finances while rejecting approaches that would harm people with disabilities and their families.

  • Congress needs to reaffirm the Security in Social Security, and reject short term solutions to the shortfall. Artificial crisis points, such as the one currently faced by the DI fund, cause great alarm for beneficiaries and their families who are forced to live for years with the fear of major cuts to benefits that often mean the difference between financial security and extreme hardship. Short-term patches to the DI fund would force SSDI beneficiaries and their families to live in a perpetual state of fear and uncertainty.
  • Congress should reject any proposals that cut eligibility, benefits, or coverage. SSDI benefits average only about $40 per day, making up the majority of income for most beneficiaries and the only source of income for one in three beneficiaries. It’s hard to imagine how anyone could get by if these extremely modest benefits were cut.

As the end of 2016 grows near, Congress must hear from people with I/DD, their families, and friends that we want Congress to sustain our SSDI lifeline for decades to come.

Sign up for The Arc’s Action Alerts and Capitol Insider newsletter to stay up to date and take action. Your voice can make a difference!

Happy Birthday to Two Essential Lifelines!

Millions of Americans with disabilities appreciate the vital contributions of the Medicaid and Medicare programs. They provide access to health care and vital home and community based supports (HCBS). Needless to say, they are essential lifelines for people with disabilities.

As we mark the 50th Anniversary of these important programs we have much to celebrate. Did you know that today for the first time in its history, home and community-based services (HCBS) accounts for a majority of Medicaid long-term services and supports (LTSS) spending? This anniversary gives us the opportunity to celebrate the fact that millions of Americans with disabilities have access health care thanks to Medicare and Medicaid. That’s right, MILLIONS of people. Approximately 9 million low-income seniors and younger people with disabilities are covered by both Medicare and Medicaid, including. These dually eligible beneficiaries have complex and often costly health care needs and rely heavily on these program. The harsh reality is without these lifeline programs, their medical needs would not be met – that alone is a cause to celebrate these essential programs.

For people with intellectual and/or developmental disabilities (I/DD) Medicaid and Medicare are especially critical. Nationwide, state and federal Medicaid together provides over 77.7% of the funding for supports and services for people with I/DD. This effective and cost efficient program is essential for people with I/DD, enabling them to live and work in the community.

Medicaid has evolved over the years just as the needs of people with I/DD. We urge Congress and the states to ensure that it can meet the future health and LTSS needs of people with I/DD and other disabilities. Please join The Arc in wishing Medicare and Medicaid a Happy Birthday – cheers to another 50 years of essential supports for people with I/DD across the nation!

Social Security – Attack Averted on Social Security, SSDI, and SSI in Senate Highway Bill

As noted in a statement by Marty Ford, Senior Executive Officer for Public Policy, The Arc applauds the Senate, which last week “…listened to the voices of people with disabilities and seniors, and removed a harmful proposal from legislation to reauthorize our nation’s highways, bridges, and public transportation system. The proposal would have partially funded the bill with cuts to Social Security, SSDI, and SSI. Social Security must not become a piggybank to pay for unrelated programs, no matter how important, and beneficiaries cannot afford any cuts to these modest but vital benefits. The Arc will remain vigilant and ready to fight back if any similar proposals arise as Congress continues to debate reauthorization of surface transportation legislation.”