American Diabetes Month: Healthy Lifestyle Choices and Exercise.

5736670215_b791c39490_zType 2 diabetes affects a staggering 23.6 million people or in another light an astonishing 7.8 percent of the American population. Studies suggest that adults who have autism are at a higher risk for diabetes, obesity, and heart complications.

In light of November being American Diabetes Awareness Month we wanted to highlight some risk factors of diabetes as well as some healthy eating tips to help decrease the risk of developing type 2 diabetes.

Risk Factors:

In order to prevent diabetes, it is important to know that there are certain risk factors that increase your chances of developing diabetes.  While there are more risk factors, below is a list of some of the more prevalent hazards:

  • Being overweight or obese
  • Not getting enough exercise or extended physical inactivity
  • Having a high cholesterol count
  • A history of heart disease
  • Hypertension

Healthy Lifestyle

The only way to be healthier is to live a healthier lifestyle! Combating the risk factors of diabetes can include eating healthier  and increasing and maintaining regular exercise.

Did you know that adults with disabilities who don’t exercise are 50% more likely to develop chronic diseases? Getting more exercise doesn’t mean you have to sign up for a marathon or triathlon, try adding a new physical activity to your routine. Remember to stay active for 30 minutes, 3 times per week.

Eating healthier is a great way to maintain a healthy weight, as well as protect against the onset of diabetes. Try a couple of the tips below:

  • Drink plenty of water
  • Choose foods low in salt
  • Cut down on sugary food and candies
  • Eat lean meats (fish, chicken, or even vegetarian alternatives)
  • Eat balanced meals

Other Resources

Check out these other great resources to keep healthy and prevent developing diabetes!

Diabetes booklet for Self-Advocates

Healthier Eating Ideas

Diabetes Risk Factors Test

Diabetes Health Resources

NCHPAD Diabetes Resources

Need Health Insurance? Open Enrollment is Now!

2016 Open Enrollment
November 1, 2015
Open enrollment begins

December 15, 2015
Enroll before this date to have coverage January 1, 2016

January 31, 2016
Open enrollment ends

If you are uninsured or looking for affordable health insurance, now is the time for you to look! During “open enrollment” you can purchase private health insurance through the marketplace in each state. Depending on your income, you may be eligible for assistance with your health insurance costs.
If you currently have insurance through the marketplace, you should look at your current plan and determine if it will continue to meet your needs, or select a better plan. If you do not take action, you will be automatically re-enrolled in your current plan. Re-enrollment provides an important opportunity to report any changes to your income. If you income has increased, reporting changes to the marketplace may help you avoid paying future penalties.

Why you should check your coverage:

  • Even if you like your health plan, new plans may be available and premiums or cost sharing may have changed since last year.
  • Even if your income has not changed, you could be eligible for more financial assistance.

If you have a disability or a health condition, pay attention to possible changes:

  • Are a broad range of health care providers included in the health plan’s network of providers?
  • Are there enough medical specialists in the network to meet your needs?
  • Are needed medications included in the plan’s list of covered drugs?
  • Is there adequate access to non-clinical, disability-specific services and supports?
  • Does the plan have service limits, such as caps on the number of office visits for therapy services?
  • Are mental health services covered to the same extent that other “physical” health benefits are covered?

Where to get help?
Health insurance can be complicated. If you or your family member needs assistance with understanding the options, can help. This website has information about seeking assistance in local communities, explanations of health insurance terms, enrollment information and much more. There is also a 24-hour phone line for consumer assistance at 1-800-318-2596 to call for help.

Autism Now’s New Service – Public Speaking Engagements

DSCN2049By: Amy Goodman, Director of Autism Now

What’s new with Autism Now, you ask? Well, one of my new roles as director is doing consulting work that involves public speaking. Public speaking is something that is difficult for individuals with autism spectrum disorder (ASD), but in order to overcome my fear of people and being social I decided to try something new. I decided it was time to for me to take my expertise from working on Autism Now and make my public speaking debut by offering services to anyone who wants me to come speak about autism, ASD, bullying, employment, or anything else related to Autism Now or TheArc@Work, our employment initiative here at The Arc.

I recently spoke at the 2015 Alabama disABILITY conference in Orange Beach, Alabama. I believe I was a success because I was able to connect with my audience of individuals with disabilities by presenting from my own experiences. For example, I was talking about dating, relationships, and marriage and I was able to use examples from my life of how I as a person with a disability was able to overcome challenges in order to be married. I was able to have a long term relationship because I was ready and needed it at that time in my life. I found someone who needed me as much as I needed them and it worked out for both of us.

Preparing for speaking engagements is a lot of work, but if done effectively can help build the confidence of the speaker. I prepare over a long period of time, like 2 to 3 months in advance, by reading the information, putting the information into an outline, and writing out what I want to say. Then writing note cards with less information and finally putting just enough information on the power point slides to remind me what to say. Usually that isn’t even full sentences.

I have learned relaxation techniques to help me with anxiety and after this first speaking engagement, I decided I will probably change how I deliver my message. Next time, I think I will share a story, a poem, or quote that has something to do with the topic I am presenting that day. The most important thing is to be able to grab your audience’s attention before starting your presentation. If you can make them laugh or smile then they will tend to be more attentive to what you have to say.

So, the next time you need someone to speak at your event or conference, who are you going to call? Amy Goodman, Director of Autism Now – I’m ready and at your service to share my story and experience your event. Contact me at or 202.600.3489.

Planning for a Future in The Workforce: Jobs, Skills, and Supports

Planning for a Future in The Workforce: Jobs, Skills, and Supports

To mark Disability Employment Awareness Month, The Arc’s Center for Future Planning convened thought leaders on a webinar to discuss how people with intellectual and developmental disabilities (I/DD) and their families should plan for a future in the workforce. If you missed it, you are not out of luck – check out this quick summary.


An ideal person-centered plan provides an accurate picture of the skills and interests of a person with I/DD. The plan should also outline the support a person with I/DD needs to be successful and be used as a document to lay the foundation for a successful career in the workforce. As Anne Roehl, Institute on Community Inclusion, University of Minnesota, noted, “We should be exploring opportunities before the old job gets boring. We should always be asking what the person wants to learn next.”

Exploring Employment Opportunities

In addition to exploring job-training programs, we should provide people with I/DD with the same tools and resources that people without disabilities use to get jobs. John Kramer, PhD, at the Institute for Community Inclusion at the University of Massachusetts Boston pointed out that “people without disabilities try out jobs, get paid, and if they don’t like it, they leave. In the disability employment world, we don’t often think of it that way. People with disabilities also benefit from getting a variety of experiences.”

It is important for people with I/DD to get an understanding of different employment opportunities and they should be encouraged to explore these possibilities during high school. People with I/DD should also be encouraged to pursue internships and informational interviews in order to continue identifying jobs that might be of interest to them.

Understanding Rights and Responsibilities in the Workplace

The Americans with Disabilities Act bars employers from discriminating against people with disabilities and provides for reasonable accommodations in the workplace. Melanie Whetzel, Lead Consultant at the Job Accommodation Network highlighted the importance of people with I/DD and their advocates understanding their rights and responsibilities under the ADA.

Challenges can arise when an employee gets a new supervisor. Melanie pointed out that the likelihood of continuity increases if accommodations are put in place for the person with I/DD through a formal process rather than informally with a supervisor. Use of a formal process increases the number of people who know about the accommodations for the person with I/DD and understand why they are effective.

Support in the Workplace

Thought leaders agreed that it’s critical for people with I/DD to strengthen workplace relationships, which will help with integrating them into workplace teams. A person with I/DD’s supporters should always be looking at how to improve conditions and training in the workplace.

For example, once a person with I/DD is in a job they may be interested in other workplace duties and express an interest in training. Acquiring additional job skills is important not only for the person with I/DD, but it’s also beneficial to the employer when employees learn new skills.


Technology is advancing and webinar panelists emphasized the importance of access to technology in all aspects of the person’s life. Even if it isn’t relevant to the job today, it could be in the future.

The panelists agreed that use of technology in the workplace should be a priority so that people with I/DD are not left behind. We should remind employers that there might be a need for on-the-job-training. Breaking down a process can enable a person with I/DD to learn the essential elements of what is needed to use a piece of technology on the job.

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.

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.

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.

Rights – White House and Federal Agencies Host Official ADA Commemoration Events

Last week, the White House held a commemoration in honor of the 25th Anniversary of the Americans with Disabilities Act (ADA). President Obama delivered a speech and noted that while there was certainly reason to celebrate, it is “also a chance to address the injustices that still linger, to remove the barriers that remain.” The President described efforts his administration has undertaken to remove these obstacles, including signing an executive order mandating the U.S. government include more people with disabilities in its workforce and to establish the first special advisor for international disability rights at the State Department. The celebration was attended by several prominent legislators, agency heads, and leaders in the disability community, including former Senators Tom Harkin (D-IA) and Bob Dole (R-KY) , former Congressman Tony Coelho (D-CA), Representative Steny Hoyer (D-MD), the House Minority Whip, and Secretary of Labor Tom Perez.   View the President’s speech here, read a transcript here, and see the White House ADA anniversary fact sheet here. In addition, a number of federal agencies hosted their own events:

  • The Department of Justice, the Equal Employment Opportunity Commission (EEOC), and the Access Board celebrated the event with speeches by Attorney General Loretta Lynch, EEOC Commissioner Chai Feldblum, Senator Bob Dole, Senator Tom Harkin and Representative Steny Hoyer. During the celebration, the EEOC and DOJ signed a Memorandum of Understanding (MOU) to strengthen ADA and Genetic Information Nondiscrimination Act enforcement efforts by the agencies. Read more about the event here.
  • The Department of Labor held a series of events including a conversation between Secretary of Labor Tom Perez and disability employment champions Senator Tom Harkin and Delaware Governor Jack Markell.   Watch the video here and see the Department’s ADA webpage here.
  • The Department of Education hosted an event that included a speech by Secretary Arne Duncan, a panel discussion, and outdoor demonstrations of accessible programs and resources. Learn more here.

Click here to see a comprehensive listing of all ADA commemorative events throughout the summer.

Social Security – 2015 Trustees Report Released

Last week, the Social Security Board of Trustees released “The 2015 Annual Report of the Board of Trustees of the Federal Old-Age and Survivors Insurance and Federal Disability Insurance Trust Funds.” The 2015 report finds that Social Security has large and growing reserves. In 2014 Social Security took in roughly $25 billion more (in total income and interest) than it paid out. Social Security’s reserves were $2.79 trillion at the beginning of 2015, and are projected to grow to $2.86 trillion at the beginning of 2020.  The long-term projections of the 2015 Trustees Report improved slightly from the 2014 Trustees Report, with exhaustion of the combined Trust Funds occurring one year later, in 2034. The 2015 Trustees Report also continues to project that the Disability Insurance (DI) trust fund by itself will be able to pay full benefits until the end of 2016, at which point if no action is taken the DI trust fund will be able to pay about 81 percent of scheduled benefits.