Thank you! The Arc Family is Thankful for YOU!

With Thanksgiving right around the corner, we here at The Arc have a lot to be thankful for and one of the main things is YOU!

The Arc is incomplete without you and your dedication to our mission to ensure that those with intellectual and developmental disabilities live a fully inclusive life. You breathe life into our mission and together we will be successful.

From the board and staff of the National office of The Arc, please accept our sincere and deep appreciation of YOU and your ongoing support of our cause nationally, statewide and locally.

We could not have accomplished all that we did this year without you, so this holiday season we wanted to THANK YOU for your commitment, support and generosity to The Arc.

From all of us here at The Arc, we wish you a safe and happy Thanksgiving.

The Arc Joins #GivingTuesday

#GivingTuesday_Shareable_ImageThe Arc is joining the national #GivingTuesday movement again this year and we need your help!

As part of The Arc’s family, please help us kick off the holiday season by joining millions in taking collaborative action to improve their local communities and give back in better, smarter ways to the charities and causes they support to help create a better world.

Join us in harnessing the power of social media to demonstrate and expand the vibrant community that makes up The Arc’s Family. Please show your support on social media to inspire and encourage your family, friends and network to take action as well this #GivingTuesday.

Millions of individuals with intellectual and developmental disabilities (I/DD) and their families are depending on The Arc. This #GivingTuesday, show that they can count on you by participating in one of the following ways:


  • Share your support by posting our “I Support The Arc” Button on Facebook or Twitter and tag The Arc and #GivingTuesday


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  • Encourage your friends and family to do the same.

The Arc recognizes that all the work we do would not be possible without our family and that not all support comes in the same way. Thank you!

Help The Arc kick off the holiday season today and Achieve with Us!


by: Theresa M. Varnet M.S.W., J.D. (Spain, Spain & Varnet, P.C., Chicago, IL and Fletcher Tilton, P.C., Worcester, MA)

On December 15, 2014, Congress passed the Disabled Military Child Protection Act which allows military families to protect their Survivor Benefit Plans (SBP) by allowing the benefits to be directed to a qualified special needs trust. If there are any funds left in the trust when the disabled beneficiary dies, the funds are paid back to Medicaid for the cost of Medicaid funded services provided to the individual over his/her lifetime.

The Military allows military members who have children with disabilities to participate in the SBP. SBP permits monthly benefit stipends of up to 55% of the military member’s pension to be paid for the benefit of a disabled adult child. Prior to the passage of this Act, benefits had to be paid directly to the adult child. The Disabled Military Child Protection Act will allow the survivor benefit to be paid directly to a “payback special needs trust” for the benefit of a child with a disability. If the benefits are distributed directly to the trust, the beneficiary will remain eligible for needs-based benefits such as SSI and Medicaid.

Beneficiaries of a parent’s SBP can now retain eligibility for Medicaid by assigning the military pension to the qualified special needs trust. A qualified special needs trust is sometimes called a ‘payback’ trust, first party trust, self-settled trust, d4(a), d4(c) trust, or an OBRA’93 trust. It is not the typical 3rd party special needs trust that parents provide in their wills and living trusts. By assigning benefits to a qualified special needs trust, these individuals will now be able to remain eligible for Medicaid which is the primary payer of long term supports and services available to persons with disabilities. Up until now, individuals who received SBP were often locked out of Medicaid funded support programs because their income was deemed too high. If the pension benefits caused him to be over income for Medicaid but did not provide sufficient income for private care, the beneficiary of a SBP was often in a worse off position because of the receipt of this pension. S/he had too much income to qualify for Medicaid but not enough income to meet one’s medical and personal care needs.

It is anticipated that military regulations will be written by the end of this year or by early 2016. Early indications are that the designation to a trust can be made by the military member anytime during his lifetime, but also assignable by the benefit recipient if or when the benefit is being received. Retirees cannot make the assignment now, but hopefully will be able to do so by early next year. We were initially told that there was going to be a narrow window of opportunity to change the beneficiary designation from the disabled child to a trust. We are now told that there will not be a restriction as to when the designation to a trust can be made. Of course, until the regulations are written, we will not know for certain what will be allowed. If you know anyone who may be receiving SBP benefits or could be eligible in the future, it is important to get this information out to them so they are ready to make the change in beneficiary as soon as possible. It is important to meet with an attorney knowledgeable in drafting a ‘payback’ trust. It is critical that the correct type of trust be designated as a beneficiary. If a typical 3rd party special needs trust is used that does not contain the restrictive language required in a payback trust, the assignment will not qualify the beneficiary of the trust for Medicaid and SSI. Parents can find the name of an attorney familiar with drafting qualified payback special needs trusts through the websites for the Academy for Special Needs Planners (ASNP) or the Special Needs Alliance (SNA). ASNP AND SNA are two professional organizations for attorneys who concentrate in this very unique and dynamic area of law.

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.

The Arc Reacts to House Passage of the Two Year Federal Budget Deal

Washington, DC – Following House passage of a bipartisan two year budget deal that raises the debt ceiling, increases discretionary spending that benefits people with disabilities (I/DD), and avoids a cut to Social Security Disability Insurance (SSDI) benefits, The Arc released the following statement:

“We commend the House for passage of the compromise Bipartisan Budget Act to keep the government open, prevent default, provide sequester relief for many programs that help people with disabilities and their families, and avoid the imminent, harmful cut to Social Security Disability Insurance (SSDI) benefits.  With so much at stake, our nation cannot afford more stalling on these critical issues.

“Remedying the uncertainty caused by inaction on federal funding and the impending debt limit crisis is good for all Americans, including people with disabilities.  While recognizing that the bill is a result of numerous compromises to reach agreement, we are deeply disappointed that the solvency of the SSDI program, a lifeline for people with disabilities, is not extended to 2034. However, we encourage the Senate to move forward with this overall package,” said Marty Ford, Senior Executive Officer for Public Policy, The Arc.


October is National Disability Employment Month

Nicole Jorwic, J.D. – Director of Rights Policy for The Arc

October is National Disability Employment Awareness Month, a time to reflect on the advancements in making employment for individuals with disabilities a reality, and also, on how much work is left to be done. As the Employment First movement has been sweeping across the country, it is important to remember why a job is so important to an individual with a disability. My brother is 26 and has autism, I asked him why getting a job is important to him, this was his response:

“I think that a job is essential to a person with a disability because it gives us purpose, and common ground to build on with the rest of the world. All my siblings get so much of their identities from their jobs, I should have the same chance. All my brothers and sisters in disability deserve the opportunities to work in our communities, for fair pay, so that we can fulfill our destinies.”

As we work in Washington DC and on the state-level to ensure that policies and practices converge to make the road to employment smoother for individuals with disabilities, we must remember that a job is an essential part of what gives someone standing in their community. Individuals with disabilities are succeeding in meaningful careers in a wide range of private businesses, government agencies and nonprofit organizations, while others are becoming entrepreneurs with their own micro-businesses.

We moved from a time when the thought of individuals with disabilities having a job was a dream, through a time when the only options were sheltered workshops, into a new era where there is meaningful and competitive work for individuals with disabilities. The value in having a response to “what do you do?” is immeasurable for individuals with disabilities across the country, including my brother Chris.

Celebrating Catalysts for Employment

The Arc’s Catalyst Awards were created to recognize individuals, businesses, and other organizations that are catalysts for achievement in the lives of people with intellectual and developmental disabilities (I/DD). In honor of National Disability Employment Awareness Month (NDEAM) we would like to highlight three of our 2015 Catalyst Award winners that have distinguished themselves as champions in creating employment opportunities for individuals with disabilities.

Acadia Windows and Doors, winner of Small Business Employer of the Year Award, is located in Aberdeen, MD. The business partners with The Arc Northern Chesapeake Region to not only employ individuals with I/DD, but to educate other local employers about the importance of including people with disabilities in the workforce. Changes that have been made at the plant to accommodate employees with I/DD have actually created a safer work environment for all employees, leading Acadia Windows and Doors to win the Safety and Health Achievement Recognition award from Occupational Health and Safety Administration.


was awarded National Employer of the Year for the work done through its Autism at Work Initiative. The initiative, headed by Jose Velasco, was started in 2013 and has set a goal of having 1 percent of the company’s total workforce be people on the autism spectrum by 2020. Through a partnership with the Danish nonprofit Specialisterne and The Arc@Work, SAP has successfully hired 12 individuals on the spectrum at pilot sites in Palo Alto, CA and Philadelphia, PA. SAP is currently in the process of hiring up to 17 more individuals with I/DD at the Philadelphia site this fall.

Tom Wheeler, winner of the Federal Government Advocate of the Year, is the Chairman of the Federal Communications Commission in Washington, DC and created the Disability Advisory Committee of the FCC. Thanks to Tom’s outstanding work 7 individuals with I/DD have been hired at the FCC and are receiving competitive salaries and benefits; and these 7 are just the beginning. As the FCC continues to hire and support individuals with I/DD it will serve as an example to the federal government as whole.


These three trailblazers have set outstanding examples of acceptance and inclusion for individuals with disabilities in the workplace. Their commitment to an inclusive work culture has created valuable opportunities for their employees with I/DD and allows individuals with I/DD to live more independently and as active members of their communities.

We have a long way to go in realizing the goal of higher rates of employment for people with I/DD – today, 85% of people with I/DD are unemployed. Are you feeling inspired to become a catalyst for change, and willing to work with us to unlock the talent of people with I/DD to better their lives and improve your workplace? To learn more about the employment related services available to chapters and businesses through The Arc@Work, please visit our website.