The Road We've Shared

Volume 1, Issue 3

March, 2016

Before and after the Diagnosis Dr. Brian Chicoine The Adult Down Syndrome Clinic

When Born This Way aired on the A&E Network, it prompted mixed emotions from the Down syndrome parent community. Strong emotions. I pondered long and hard about why those emotions came to the surface, and how we could help bridge the gap between parents who loved the series for the awareness it provided and those who experienced a level of grief because of what they saw. The “Born This Way – Building Support Systems Track” is a result of that search.

FROM THE EDITOR STEPHANIE HOLLAND Every March we celebrate World Down Syndrome Day on the 21st. 3/21 stands for three copies of the twentyfirst chromosome— Trisomy 21—Down syndrome. For the past three years, we celebrate by participating in the 321 eConference put on by 321 eLearning.

This year, I had the opportunity to help plan the sessions and arrange for speakers on topics of interest to the parents/ caregivers of adults with Down syndrome. This edition of our eMag is devoted to showcasing those sessions.

Stephanie

Perspective From the moment the first episode aired, I knew that some parents would find it hard to watch. Social media exploded the next day. Some praised it for the groundbreaking series it is. Others disclosed that they found it hard to watch the young adult cast and felt that they did not accurately represent the entire spectrum of life with Down syndrome. Keeping in mind that television is ultimately designed to entertain, I urged our community to focus on the positive. Nevertheless, my heart went out to the parents who felt sad watching other adults who were, in their words, “high functioning,” doing things that they felt their own children would never do.

I had several conversations about how I dislike the dichotomy of high-, versus low-functioning. In a conversation with cast member Sean’s mother, Sandra McElwee, I realized that one of the issues is access to services.

Sandra commented that, in her opinion, the cast members are not necessarily “high-functioning.” What they are is “fully supported.”

Adult Services This led to an acknowledgement that families experience different levels of access to services. Some cultures look at asking for support differently. Some families, especially those in rural areas, simply don’t have access to appropriate services. Once children “age out” of school supports, finding services becomes even more difficult. Medicaid wait lists makes it almost impossible in some areas. During my conversation with Sandra, I learned that California is different in this respect. Adult services are an entitlement, like they are for school aged children elsewhere, because of what is called “The Lanterman Act.” With all of this in mind, I started reaching out to the service providers that the cast members use. Four of the actual providers graciously accepted our invitation to present at the conference.

John Paizis, Founder/Director of Performing Arts Studio West

Joseph Nacario, Executive of Integrated Resources Institute

Viewers of the show will remember that John Tucker and Elena are students of this amazing program. John will join us to talk about “how professional training in acting, music and dance has transformed the lives of hundreds of adults with intellectual disabilities that he and his staff have worked with for over 17 years.” His session is called “The Performing Arts as a Means to Increased Socialization, Self-Confidence, and Employment Opportunities.”

Work is important for everyone and several of the cast members have jobs in the community that they love. Integrated Resources Institute helps people with disabilities, including Sean from Born This Way, find and keep rewarding employment.

Joseph Nacario will address “how people should pursue employment and best practices in employment support services.”

Kristen Cummings-Prater and Lovings from Leaps n Boundz

Lisa Ruby, Executive Director, iCan Shine

Tacara

Two directors from the “clubhouse” where many of the conversations shown on the series will talk about Incorporating Motor Skills into Social Skills

His session is called: Employment for All

Director

Employment

First,

Sean, Megan, and Christina went to a “bike camp,” offered by I Can Shine. Lisa Ruby joins us to talk about how important this skill can be to people with disabilities and how their program can help students gain those in her session: More Than A Bike Ride: Pedaling Toward Independence.

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Finding Support Part of the issue is finding out what types of support are out there. The other part is figuring out how we, as parents and caregivers, can access these services and what we can do if they don’t exist in our area. For that we’ll look to the experts on local support between families, and how the adult service

hen bad things happen to good people, we have two choices. 1) Get angry, condemn the perpetrator and move on.

2) Take a hard look at the systemic problems that allowed the perpetrator to get away with it in the first place and work to create change.

News about a bill currently under review in Washington State came across social media recently.

“Bill should make ‘major difference’ for hundreds of disabled citizens.”

If you just focus on the headline, it sounds like cause for celebration. But if you dig further into the story, you find a case of years of abuse going unchecked: sexual abuse that resulted in pregnancy, neglect, incompetent agency workers, and family members who fail to protect their loved one. For years, the only attention the story was given came in the form of punishment for the offender and a legal settlement that set aside $2.5 million for the victims future care.

Deanna Tharpe, Executive Director of Down Syndrome Affiliates In Action (DSAIA) and Deborah Tomai from the Red Grande Valley Down Syndrome Association will talk to us about Finding Local Support.

And Christine M Grosso, MS, Policy Analyst at the Association of University Centers on Disabilities (AUCD) & David Machledt, Ph.D., Policy Analyst at the National Health Law Program will talk to us about the new home and community based services (HCBS) waiver rules and what that can mean to parents.

The recorded sessions are now online– available for viewing at your leisure, If you’d like to purchase this track of 6 sessions for only $21 go to: http://bit.ly/BornThisWay321

Visit NHelP for more info:

http://www.healthlaw.org/

Finally, the media got involved and brought the case to the attention of state Sen. Steve O’Ban. That’s how the legislation got started.

What Can We Do The advocacy that occurred after Ethan Saylor was killed and when a 25-year-old woman with Down syndrome was raped in Colorado is the kind that makes systemic change. It takes hard work and determination. It also takes knowledge – the kind that comes from connecting and collaborating with people who understand the different aspects involved. Change doesn’t occur in a vacuum. We all need to work together to make anything that will stick and protect others in the long term.

It is in this spirit of collaboration that we created the “Advocacy” track at this year’s 321 eConference. The sessions allow families to hear about what is being done, and how they can get involved.

Leigh Ann Davis from the National Center on Criminal Justice and Disability (NCCJD) talked about Creating Pathways to Justice for People with Intellectual and Developmental Disabilities in the Criminal Justice System

Jawanda Mast, Manager of Grassroots Advocacy at the National Down Syndrome Society (NDSS) told us about their advocacy programs in her session called “Telling Your Story Through NDSS Advocacy Programs.”

Photo from Jawanda’s blog: http://www.thesassysoutherngal.com/

Patti Saylor and Heather Sachs from the National Down Syndrome Society (NDSS) gave an update on their advocacy around empowering self-advocates to become trainers of police in their session entitled: Ethan Saylor Alliance for SelfAdvocates as Educators: A Model for All States

Stephanie Holland (The Road We’ve Shared) and Dr. Sujata Bardham (National Institutes of Health), discuss the racial health disparities in our community and how we can advocate for more research in this area.

Did you know: Research exists that tells us non-white people who have Down syndrome, on average, live half as long as those who are white?

In the session entitled: Racial Health Disparities in Down Syndrome: What We Know and What Is Needed, parent Stephanie Holland presents the research and reactions from the scientific community. Dr. Bardham, follows up with how DS-Connect, the Down syndrome registry, can help parents, scientists, and advocates press for more research in this area—the first step in understanding and addressing this racial disparity.

To purchase access to these four sessions and the keynote session — Alzheimer Disease: Before and After the Diagnosis by Dr. Brian Chicoine from the Adult Down Syndrome Clinic for only $21 visit:

http://bit.ly/Advocacy321

Sexuality Matters Jennie Hilleren Licensed Marriage and Family Therapy & Certified Sex Therapist This session will provide participants with basic sexuality information and the importance of acknowledging sexual health concerns for all.

Participants will also learn about resources for understanding working with sexuality.

One of the most difficult, and most important, issues that face parents and caregivers of adults with intellectual and developmental disabilities.

Boundary Fluidity: The Slippery Slope Between Sexual Health & Sexual Violence Beverly Frantz Project Director Criminal Justice & Sexuality Initiative Institute on Disabilities at Temple University This session is an open and frank discussion on the perceptions and realities that shape our understanding of social sexual etiquette, nuances, and behaviors from a family, school and criminal justice perspective. The connection between our silent assumptions, political climate & correctness, and our discomfort talking about healthy sexuality will also be explored as it impacts the increase risk for sexual victimization and sexual offending.

Assuring that all employees including employees with disabilities can be productive takes many steps. One of the steps is assuring that the Internet, Communications and Technology is fully accessible.

It also includes the built environment. It is critical that employers understand the value of access and accommodations to tap into all abilities in their workforce.

Valued, Able & Ready to Work: Employing Individuals with Down Syndrome This presentation, based on the new (NDSS) resource, Valued, Able & Ready to Work: Employing Individuals with Down Syndrome, is intended to educate employers on hiring people with Down syndrome by highlighting benefits, suggesting tips for success, identifying some challenges, sharing success stories and providing resources. During the presentation David Egan, an individual with Down syndrome who has been competitively employed for more than twenty years, walks us through the resource, discussing his leadership on its development, as well as his employment experiences.

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avid Egan has always dreamed big. When he was eight, starting out as a Special Olympics swimmer, he dreamed of winning his races. As he grew, he looked to bigger goals-having a job and finding ways to change attitudes toward people with intellectual disabilities. David has been living his dream-and inspiring others to live theirs. David is a J.P. Kennedy Jr. Public Policy Fellow. His one year fellowship started by working with the Ways and Means Social Security Sub Committee on Capitol Hill and then with the National Down Syndrome Society in Washington DC. David is a CBRE staff employee working at the Booz Allen and Hamilton Distribution Center at the McLean Campus where he first started as an intern when he was in high school in 1996. An eager advocate for people with disabilities, David has been active on several Boards over the years. He currently serves as a Board Member on the Down Syndrome Association of Northern Virginia (DSANV), the ARC of Northern Virginia and is a Special Olympics Sargent Shriver International Global Messenger. He speaks at various events and groups raising awareness and engaging supporters in their involvement to promoting the values of inclusion, dignity, and respect.

Learn more about David Egan, the Advocate at www.davideganadvocacy.com.

Brian Chicoine M.D., is the Medical Director of the Advocate Medical Group Adult Down Syndrome Center at Advocate Lutheran General Hospital in Park Ridge, IL. He is on the faculty of Family Medicine at Advocate Lutheran General Hospital. Dr. Chicoine is co-founder of the Adult Down Syndrome Center that has served and documented the health and psychosocial needs of over 6000 adolescents and adults with Down syndrome since its inception in 1992.

Alzheimer disease presents at a younger age and may be more common in people with Down syndrome. Other health conditions can mimic the symptoms of Alzheimer disease so it is important to assess for these conditions. Once the diagnosis is made, attention to the individual’s health and environment can optimize the quality of life. An additional important piece of the care plan includes supporting the family/care giver. Our Patient Advocates will share what we have learned from supporting families in the clinic and through a unique support group that has been meeting at the center for the past two years.

Dr. Chicoine graduated from Loyola University Stritch School of Medicine and completed his Family Medicine residency at Lutheran General Hospital. He presents regularly at national and regional conferences, published many articles and co-authored two books “Mental Wellness of Adults with Down Syndrome,” and “The Guide to Good Health for Teens and Adults with Down Syndrome” published by Woodbine House Press.

Merrily Smith

Grace O'Connor

Patient Advocates at the Adult Down Syndrome Center talk about caring for the caregiver and support groups.

Seizing the Momentum

Down syndrome biomedical research, and specifically cognition research involving learning, memory and speech, has enormous potential to create new opportunities for children and adults with Down syndrome to participate more successfully in schools and employment, lead more independent lives, and to prevent additional cognitive decline with aging and associated with the earlier-onset of the pathology associated with Alzheimer’s disease. This is the mission and focus of the LuMind Down Syndrome Foundation. This presentation will provide an overview and update on the recent very rapid and dramatic progress in Down syndrome cognition research leading to important new discoveries, initiatives and clinical trials for translation into potential new effective therapies for the developmental intellectual disability and the earlier onset Alzheimer’s disease in individuals with Down syndrome.

Dr. Harpold has more than 35 years’ experience in biomedical research within both academia and the biotechnology industry. Prior to joining LuMind, Dr. Harpold established EnkephaSys, Inc. as a consultant on research, business, and intellectual property issues for pharmaceutical and biotechnology companies. In addition, Dr. Harpold was a founding member and an executive of The Salk Institute Biotechnology/Industrial Associates, Inc. (subsequently SIBIA Neurosciences, Inc.), a biotechnology and pharmaceutical company in La Jolla, CA. There he served for 17 years as the company’s Vice President, Research through its IPO and prior to its acquisition by Merck.

Visit LuMind: https://www.lumindrds.org/

Dr. Michael Harpold Chief Scientific Officer and Chair, Scientific Advisory Board LuMind Research Down Syndrome

Community

WHY I LOVE THE 321 ECONFERENCE! Knowledge is Power Part of being a parent is learning what you need to know in order to support your children. When something like Down syndrome is involved there’s much more to learn. Access to information can be very different from family to family based on a multitude of reasons. The 321 eConference levels the playing field a bit by providing access to experts at reasonable prices.

Perspective We all want give our loved ones the best life possible.

Information is key to opening a whole world of medical, social, and educational doors. As a young parent, unfamiliar with what Down syndrome was, I had no idea how much I didn’t know. The depth and breadth of my ignorance was tremendous. Luckily, my son was born in an area and time when I had access to experts. I often wonder how different our lives would have been if I didn’t.

Today, the internet can bring people together in ways that weren’t possible when my son was born in 1987. We have access to other parents, doctors, education and policy experts. There is so much information out there, sorting through it can be exhausting.

The 321 eConference brings experts into our homes. We don’t have to pay for travel or appointments. We don’t even have to juggle our schedules if we don’t want to – we can watch the recorded sessions when the kids have gone to bed or in the car while we’re driving to work. And, the conference fees are extremely affordable, especially compared to in-person events.

The tagline used by 321 eLearning: Knowledge, Empowerment, Advocacy, is more than just a catchy publicity line. Founder Dr. Jennifer Smolka truly believes in her work and the power that comes with being educated about the issues we face as parents. She’s also a mom to four boys, the youngest, Jared, has Mosaic Down syndrome.

She’s one of us. She gets it.

Since I’ve become involved as the “Adult Content Curator,” I’ve been able to focus on creating sessions for our community. Other conferences I’ve attended have had a few sessions sprinkled here and there for parents of adults. I’m proud to say that this year at the 321 eConference we have several tracks dedicated to issues of concern to parents whose children are past high school age. The ideas for the sessions, what to cover and who to ask, came directly from the community – questions and concerns that were posted in various groups on social media.

Learn With Us This year, for the first time, sessions have been scheduled in “tracks.” Each track has a specific focus and offers attendees the ability to buy just the sessions they’re interested in. The full 3-day conference is reasonably priced at $75, and includes over 60 live webinars and access to the recorded sessions for 60 days. However, if you’re just interested in the sessions about work, for example, you can purchase the “Work For All” track for $21.00. Each track includes a variety of sessions held consecutively on the same day and gives you access to the recorded sessions. You can also purchase one live session for $7.21.

Find all of the sessions mentioned and more at: http://www.321elearning.net/2016-econference-main/