In the spirit of this year’s Older Americans Month theme, “Blaze a Trail,” The Arc recognizes the many parents of adults with intellectual and developmental disabilities (I/DD) who fought for decades to raise their children at home, to realize their rights to free and appropriate public education, and for recognition as valued contributors to the community. The Arc is committed to supporting these aging caregivers and their adult sons and daughters with I/DD to develop a roadmap for the future.

Future planning is important for all families, but it can be especially challenging for the almost 1 million families in which adults with I/DD are living with aging caregivers. In two-thirds of these families, there is no plan in place for the future. Many of these families have no connection to the disability community or the disability service system. It is our role to support them to overcome the fear of planning and provide them the information and resources they need to create future plans.

To support these trailblazing families, The Arc of the United States launched the Center for Future Planning™ in 2014. Discussing these major life transitions and putting a plan in place may actually alleviate some of the stress experienced by aging caregivers, their adult sons and daughters, and other family members and supporters.

The Center’s website provides reliable information and assistance to individuals with I/DD, their family members and friends, staff at chapters of The Arc, and other disability professionals on:

• person-centered planning
• supported decision-making and guardianship
• housing options
• financial planning (including public benefits, special needs trusts, and ABLE accounts)
• employment and daily activities
• making social connections
• providing information if an urgent need arises

During Older Americans Month, here are some ways you can access more help:

• Read more information about future planning and see how other families have planned.
• View The Arc’s webinar on supports and services for aging caregivers.
• Visit The Arc’s new Build Your Plan™ online tool that enables families to create accounts and begin to build their plans within the Center for Future Planning™.
• Encourage families you know to start the process and to get support in their communities. Chapters of The Arc around the country can provide guidance and information about local resources. Families can also identify professionals in their communities to help them create and implement future plans through The Arc’s Professional Services Directory.
• In addition, Area Agencies on Aging (AAA) can help with accessing services and support available to seniors. AAAs offer a variety of home and community-based services such as respite, meals on wheels, and transportation. Visit ncoa.org for more information about additional benefits available to seniors.

Supporting aging caregivers and adults with I/DD is an ongoing process and is possible with the help of other family members, friends, the community and professionals. It’s important to work together to develop a plan that will ease the stress of future transitions. You can contact The Arc’s national office at (202) 202-617-3268 or futureplanning@thearc.org for more help.

By: Nicole Jorwic, Director of Rights Policy

Every behavior is a form of communication. This is a truth that must be remembered, as we advocate for the civil rights for individuals with intellectual and developmental disabilities (I/DD). Even self-injurious or aggressive behaviors are an attempt by an individual to demonstrate something. Supports should be in place to draw out that communication, not shock it or punish it away. This is why the recent proposed rule from the Food and Drug Administration (FDA) banning the use of electrical stimulation devices (ESD) to treat these forms of behavior is so important.

Per the FDA’s proposed rule, the use of electrical stimulation devices pose the risks of depression, fear, anxiety, panic, learned helplessness, and are associated with the additional risks of nightmares, flashbacks, hypervigilance, insensitivity to fatigue or pain, changes in sleep patterns, loss of interest, difficulty concentrating, and withdrawal from usual activity. The science verifying those risks is clear, while there is no scientific proof that the use of electric shock has benefits in the short or long term.

The science has been clear for years and for decades The Arc has provided testimony at hearings on this issue, submitted comments, and filed amicus briefs encouraging the ban of these devices. Instead of using harmful and demoralizing ESDs, the focus of treatment for all individuals with I/DD who cannot use their voices or other forms of communication to express their wants and needs, must be on changing environmental factors. This will allow the roots of challenging behaviors to be found and allow the individual to discover alternative behaviors that can be used to meet their needs.

The Arc has adopted position statements opposing the use of aversive procedures since at least 1984. Our current position statement on Behavioral Supports developed jointly with the American Association on Intellectual and Developmental Disabilities (AAIDD) and adopted by both organizations in 2010, states in part:

Research indicates that aversive procedures such as deprivation, physical restraint and seclusion do not reduce challenging behaviors, and in fact can inhibit the development of appropriate skills and behaviors. These practices are dangerous, dehumanizing, result in a loss of dignity, and are unacceptable in a civilized society.

The Arc and AAIDD are opposed to all aversive procedures, such as electric shock, deprivation, seclusion, and isolation. Interventions must not withhold essential food and drink, cause physical and/or psychological pain, or result in humiliation or discomfort.

Our position statement on Education, which was adopted by the Congress of Delegates in 2011, states in part: “In order to provide a free, appropriate public education for students with I/DD, all those involved in the education of students with I/DD must ensure that students with disabilities are not subjected to unwarranted restraint or isolation or to aversives.”

The Arc is strong in its belief that it is the responsibility of government to protect individuals with disabilities from mistreatment. Using aversive procedures to change behaviors of individuals with intellectual and developmental disabilities is dangerous, dehumanizing, a violation of civil rights, results in a loss of dignity, and is unacceptable in a civilized society.

The Arc applauds the FDA in its effort to ban the use of devices that emit electric shock as a means of modifying the behavior of individuals with intellectual and developmental disabilities.

It is with heavy hearts we share the news that Adonis Reddick passed away last week. Adonis was an amazing and powerful advocate and we will remember him as a dear friend to The Arc.

Adonis was a powerhouse when it came to advocating for people with disabilities in St. Louis, and his work inspired change statewide. The vision of a better world for individuals with disabilities was what drove him and that was reflected in everything he did.

Adonis never sat on the sidelines, he was constantly working. He served as a member of St. Louis Arc’s Human Rights Committee, the St. Louis Self Determination Collaborative, The Coalition on Truth in Independence, and was active Partners in Policymaking at the state level. In addition to his work with these groups he co-founded of the Association of Spanish Lake Advocates (ASLA), a group committed to an accessible world based in full inclusion. Hard to imagine that in addition to all of this he also actively pursued opportunities to speak to local governments, agencies, businesses, and community leaders to ensure that the voices of those living with a disability were heard.

His unwavering commitment and passion for his work was as infectious as his smile. Where others saw barriers, he saw the opportunity for collaboration and change – one of the many reasons he was able to make such an impact.

Many know Adonis as the inaugural winner of The Arc’s Catalyst Award for Self-Advocate of the Year. These awards were created to recognize those who were trailblazing to make the future more inclusive. We seek out the best of the best people and organizations making an impact of national significance.

At the awards luncheon, you could have heard a pin drop when Adonis was at the podium. He captivated us with his energy. His energy became the room’s energy when he said:

“Whatever you want in this world you can put in or take out. Together we can make change happen.”

He put everything in, and we thank him for making many great things happen.

Maintaining a healthy weight is hard all year round, but can be especially hard during the winter holiday season. According to the CDC, maintaining healthy weight happens when a person keeps his or her weight at the right amount based upon a person’s height, the amount of food/drink he or she eats, and his or her activity level.

Maintaining a healthy weight can be hard, but people with disabilities tend to have more difficulty maintaining a healthy weight than people without disabilities. This occurs for many reasons, including the use of various prescription drugs that cause weight gain, less opportunity or education about exercising, fewer trainers who know how to work with people with disabilities, and less education about how or why it is important to eat healthily.

Fortunately for all of us who need to be better at watching our weight, January is National Healthy Weight Awareness Month! This month encourages people of all ages, weights, dress/pant sizes, and ability levels to improve their health and well-being by being more active and eating healthier. Here are some things that you and your family can do to improve your health and start your year right:

• Check out the CDC’s Physical Activity Guidelines to learn more about how people with disabilities can include physical activity in their everyday lives.
• Give Mall Walking a try
• Visit the NCHPAD website to find an accessible gym that is right for you and your family
• Eat healthy well-balanced meals. The CDC has some great tips on maintaining a healthy weight through healthy eating, which includes creating a healthy eating plan.
• Eat more fruits and vegetables – check out the CDC’s video about finding a balance in your diet.
• Join NCHPAD’s 14-week individualized fitness and exercise program for people with disabilities to improve your fitness level and eating habits

Reaching your healthy weight goals takes time. While you may not get to your ideal weight overnight, we hope these links will provide you inspiration and opportunities to get active and have a happy and healthier 2016!

By Amy Goodman, Director Autism Now

The launch of my newest feature on Autism Now: Public Speaking has gone well. I have presented two times. I presented on Marriage, Dating, and Relationships at The Arc of Alabama’s conference in October, and I just presented in New York about Adult Bullying. This presentation focused on what to do after the bullying incident and what to include in an anti-bullying program at The Family Service League of New York in North Hampton Beach, Long Island.

This experience gave me insight into what teachers, professionals, and service personnel need in terms of helping children, adolescence, and adults on the spectrum to overcome this challenge and move on with their life. I learned about different anti-bullying techniques or programs that were being implemented in New York Schools. One such program was a buddy system where an individual with an ASD was paired with a pal or mentor and they had to have lunch with them two or three times a week to work on social skills. Sometimes it worked and sometimes it didn’t as one teacher reported that yes, the two met, but one was eating and one was reading a book and not conversing at all. The point of the meeting was supposed to be getting individuals with ASD to be open and talking and not always passive and avoiding, not just reading, to show them that it is okay to talk too.

I was able to use my personal story to show what the long term effects of bullying are and what kinds of things I think need to be addressed to help individuals on the spectrum to cope with the aftermath. The saying “sticks and stones may break my bones, but words will never hurt me” just isn’t true at all – words do hurt and it is a taunt that can haunt an individual forever. Words can traumatize this vulnerable population in unspeakable ways.

My motto is this: Stand up to the bullies, be brave, and be a buddy not a bully. I know that this is a tall order and it is easier said than done but the more you talk about it and the more you advocate for the bully to do the right thing the better off you will be. Bullies can be mean and nasty but you can be better than them by being yourself, standing up for what you believe in, and doing the right thing by reporting incidents of bullying to the proper authorities. Life can and will get better, just open your eyes and see all the possibilities out there. Above all else believe in yourself and remember the more you know the more empowered you will be.

If you would like to find out more about my services, please contact me at info@autismnow.org.