General Overview

I’ve been in this race for understanding for over a decade and I’ve seen so many amazing strides in the past decade. However, just as a driver in a race with a lead, there can be no let-up on the pace. We must keep going and racing because each day a parent out there, somewhere out there, will have an issue in public and may require help, or perhaps confronted by an employee of a store.

A great example of this is several years ago I was on a flight and as we pulled away from the gate a young girl, maybe 4 or so, was not fully in her seat. The flight attendant came rushing and told the mom that all passengers needed to be in their seat with their seat belts fastened. The girl began to scream when the mom told her she had to sit in her own seat. The flight attendant double downed and said, “Ma’am, she must have a seat belt on! She’s too old to be an infant in arms.” The girl clung onto her mom with a firm grasp and the flight attendant raised her voice and said, “FAA regulations stipulate” and then she looked at the girl again and the flight attendant went from an authority figure to a person with a compassionate voice and she leaned towards the mother and simply asked, “Autism?”

The mom, whose face I could not see, didn’t say a word but simply nodded. The flight attendant tilted her head for a moment and then rushed to the back of the plane. When she returned she brought with her several seat belt extenders. Now, I don’t know if this was exactly up to FAA regulations, by connecting the seat belts together the mom was holding her daughter while the daughter was strapped by the belts in the seat beside her.

The previous story… did you hear about this on the news? Was there an award given? No, and maybe even the flight attendant doesn’t remember this story now. However, what would this have looked like had the plane had to turn around and the mother and daughter were removed from the plane? Then it would easily be findable with a quick Google search and both the mother and daughter may have been traumatized for life.

The race for awareness and understanding, its essence, is in the story on that plane. This shouldn’t be something to witness and be astounded by but rather should be expected. I hope we can get to that point in our lifetime, but this is going to be an ongoing race with no set distance of the length of this race.

This, of course, isn’t to say that we should allow a dangerous situation as in now having someone buckled into a seat, but finding a compromise and understanding that, in that moment as the pressure in the cabin changed and all sorts of new noises were bombarding that four year old’s senses, that she quite simply was not going to be able to sit without being held. Well, this race is one of kindness, understanding, compromise, and for any company out there training and education are of the utmost importance because they can scar a family for life and forever henceforth have their misunderstanding easily findable on Google. Sadly, there will be no award for their work.

There won’t be a day under the sun for the unsung heroes that go out of their way to solve a problem that may arise, but those that achieve the highest ranks in this race may or may not know that they are part of a collective movement that I hope will one day lead the world to be as accommodating and safe for every person on the autism spectrum to live, work, and play.

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Affecting about 206,000 Americans, Down syndrome is the most common chromosomal condition. Although it can lead to higher risks of congenital cardiac issues, autoimmune diseases, and Alzheimer’s disease, the life expectancy of those with this condition has increased from 25 years in 1983 to 60 years in 2020.

And now for the first time, researchers have developed clinical guidelines for primary care for adults with Down syndrome, leading to a higher quality of care for this population.

Background

Driven by the lack of clinical research in several of the areas addressed by the guidelines, research for this life-changing development has been years in the making. Sources report that experts from eight of America’s largest adult Down syndrome medical centers spent four years examining research on the treatment of those with the chromosomal disorder.

The team focused on how Down syndrome intersected with treatment of mental health, dementia, diabetes, cardiovascular disease, obesity, osteoporosis, atlantoaxial instability, thyroid disease, and celiac disease.

Results and Recommendations

The result, published in the Journal of the American Medical Association (JAMA), is a paper with 14 recommendations and four statements of good practice for clinicians treating those with Down syndrome. The team’s strongest recommendation is for everyone with Down syndrome to be screened for Alzheimer’s disease starting at 40 years old.

Two recommendations urge earlier and more frequent diabetes screening. Four other recommendations — managing risk factors for cardiovascular disease and stroke prevention, screening for obesity, and evaluation for secondary causes of osteoporosis — paralleled guidance that’s already in place for those without Down syndrome.

“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, or GLOBAL, which spearheaded the effort. “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”

For more information

Every person with disabilities deserves care, love, and support. We understand this, and we’re determined to help your adult child live a full, independent lifestyle with ongoing support and community interaction.

Contact us at (501) 227-3600 to get involved with Easterseals Arkansas or to learn more about how we can help you and your loved one today.

The post New Guidelines for Treating Adults with Down Syndrome appeared first on Easterseals Arkansas Blog.

If you’re a parent with an adult child who has disabilities, you know that they will someday want to live independently. And as you prepare for that day, you probably have many questions about it. Here are some common questions that parents often ask, some ways that Easterseals Arkansas can help you prepare, and some incredible success stories to encourage you along the way.

Can my adult child with a disability live independently?

Yes, they can. The staff at Easterseals Arkansas knows that you want the highest level of independence for your child. In fact, for over 70 years, the Adult Services programs have shown parents and families what strength, resilience, and independence that their children are capable of.

Success stories also show this to be true. Check out these stories of some incredible people who have shown their families, their employers, and the Easterseals Arkansas staff what it means to live independently as a disabled adult.

Success stories

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These stories are just a few of the many that the Easterseals Arkansas staff can tell you about. Above all, these stories show how disabled adults can:

• Enjoy special activities at home and in the community.
• Participate in work and athletic groups to share their joy and talents with others.
• Continue their education when they choose to do so.
• Find support in leading a meaningful life because of your devotion and Easterseals Arkansas services.

How can an adult with a disability live independently?

Now that you’ve read about the lives and interests of some community representatives, it helps to learn how Easterseals Arkansas promotes independent living for adults with disabilities.

Housing

Through generous donations and various government-funded programs, the Adult Services programs offer your adult child housing options that are funded in part through the U.S. Department of Housing and Urban Development (HUD). Options include:

• Four distinct apartment communities of independent living apartments. Each complex includes up to 17 ground-floor units as well as a community room, laundry area, and on-site manager.
• A residential setting for 10 people who have specialized care that supports their well-being and independence with self-care skills.

Programs

Adult Services programs provide adults with disabilities a range of options that encourage fun, learning, and community relationships. These services provide:

• Job training and employment with individualized job counseling and a variety of work settings. SET for success is one option for your child who is transitioning to adulthood.
• Literacy options, including a technology lab and reading clubs
• A unique program called ACCE, which offers adults with disabilities a college experience as they prepare to enter the workforce. Easterseals Arkansas partners with UA Little Rock to offer this meaningful educational option.
• Therapies that help with communication, strength, and daily skills
• Healthy meals and cooking lessons
• Volunteer programs and social activities

The programs also ensure that eligible individuals have the option of in-home services through the Medicaid Waiver program. These include guiding your adult child toward independent living with:

• Supportive training to increase daily living skills
• Transportation to community events and special places, such as parks and libraries
• Supported employment, including competitive placements
• Adaptive equipment and special medical supplies

What are the Signs that My Adult Child is Ready to Live Independently?

Every staff member here knows that disabled adults have unique interests, gifts, and needs. That is one reason why Easterseals Arkansas offers the range of services and activities that it does. We hope to put your mind more at ease by sharing signs that your adult child is ready to live independently as they:

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Supporting your adult child’s independence

As you reviewed this list of services, you most likely wondered about your adult child’s readiness to transition to independent living. This is completely understandable. You can be assured that Easterseals Arkansas will partner with you and your adult child as you prepare to take this important step.

The staff aims to put your mind more at ease by recognizing your child’s potential, fostering it, and using it to support them on their way to independence.

For more information

Every person with disabilities deserves care, love, and support. We understand this, and we’re determined help your adult child live a full, independent lifestyle with ongoing support and community interaction. We also want you to have the assurances you need that we’ll continually advocate for and support your adult child’s well-being, just as you do.

Contact us today at (501) 227-3600 to get involved or to learn more about how we can help you and your loved one.

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Autism Ambassador Aaron Likens (pictured above with our CEO Ron Ekstrand) came to Easterseals Arkansas in January to talk about what it’s like living on the spectrum. He describes it succinctly in his book, “Finding Kansas.” Now, as someone on the spectrum living through the COVID-19 pandemic, Aaron shares what that is like and how others can help someone like him navigate through these unprecedented times in which we find ourselves.

Aaron Likens: “In Search Of My Routine”

Routine

Although I wasn’t diagnosed with Asperger’s Syndrome until I was 20-years old, there were signs and behaviors long before. The need for a “routine” was definitely on this list. Routine is one of the most important things in my life. It was when I was young, before anyone knew what Asperger’s was, and it is still just as vital today. When I didn’t know what the routine was – my routine – I would repeatedly ask my dad, “What’s next?” I had to know. I always had to know. Still do, to be honest, as knowing provides so much comfort.

Change

In the past few weeks with COVID-19, there have been truly unprecedented and monumental events and changes in the lives of all Americans. For those like me on the autism spectrum, these changes cause great anxiety well beyond the anxiety everyone else is feeling. I’ll admit that there is great uncertainty for everyone, but for those on the spectrum it’s magnified by a power of 100!

Imagine being on the spectrum and needing to have everything the same as it was yesterday. Out of the blue, schools are being closed on a statewide level and a definitive return date is unknown. Students look forward to and are accustomed to spring break, and the extended summer break, but now, suddenly, there’s a major change that wasn’t predicted, nor could it have been.

Fear

The impact of COVID-19 is almost impossible to avoid and I wish I could tell you, whether you’re a parent, sibling, guardian, or just a friend of a person on the spectrum, how to comfort a person with autism. I’m 37 and I’m experiencing a level of anxiety I haven’t felt before. On one hand, I’d love for a person to utter some magic words to ease the fear, which I’m sure is true for most anyone, on the spectrum or not. On the other hand, I’m thankful that those I know haven’t attempted to do so.

You see, attempts at minimizing fears for those of us on the spectrum are likely just a one-way ticket to further anxiety and frustration. It’s hard enough for me to speak about something once. If I know or even think that speaking about my feelings or fears will draw a flippant “oh, don’t worry” let alone a harsh or critical response, I’m simply not going to say anything! I’ll swallow my fear and live with the anxiety.

Then things can go downhill from there, because there’s no outlet for my emotions, which leads to a bigger bout of anxiety, which leads to more fear, which… you see where this is going.

Imagination

The worst thing of all, for me, has been the imagination which accompanies being on the spectrum. I laugh when I hear people say “people on the spectrum can’t have an imagination” although sometimes I wish that were true. While I may not have been able to pretend or enjoy imaginative play growing up, I’ve always been able to play out scenarios in my head. This can be a gift as a lot of the chapters in my book, which I speak about frequently, are associated with scenarios that became teaching lessons. 

Unfortunately, when the world becomes a shaky place, the imagination makes it infinitely worse as there’s no stop to the processing of cataclysmic “what if” scenarios and I can become overwhelmed with the inability to determine “what’s next?”

Communication

What is next? I don’t have that answer and I don’t think anyone can say with any certainty. However, thinking back to my 12-year-old self, I would’ve been in an extremely bad place right now because school, my major source of stability and communication, albeit limited, would have been taken away from me. You see, even though I despised going to school, a major schedule change – a disruption to my routine – would’ve been worse.

With that said, parents or siblings, if you have someone in your household that’s on the spectrum and struggling at this time, please know that consistent, patient communication is critical and extremely helpful. While we may not give an instant response to your words of comfort, they are being listened to, even if words to the contrary are being spoken. Be prepared for repetitive questions.

I was the master of this and I would ask the same question maybe just 20 minutes (or less) apart and I was always looking for consistency in answers because if I knew my parents said the same thing multiple times then that must be the way it was going to be.

Of course, you won’t have the answers to everything… and that’s okay! No one does right now. You won’t be able to say when they’re favorite sports team will resume play, or when their classes may start again, but you can be there for them in whatever way you can when that doubt about the future and fear rolls in like a storm coming off the Rockies, and they ask you, “What’s next?”

Most importantly, I can say with 100% confidence that simply being there for them in whatever way you can is almost as good as actually knowing the full answer to the question we are all wondering….“When can I have my routine back?”

Aaron Likens is the Author of “Finding Kansas,” a nationally recognized speaker on the subject of autism awareness and serves as autism ambassador for Easterseals Arkansas.

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Easterseals Arkansas has hired David Ivers, a noted healthcare attorney, as Vice President of External Affairs and General Counsel.

Ivers comes to Easterseals from Mitchell, Blackstock, Ivers & Sneddon PLLC. He is no stranger to Easterseals, he says, noting, “Easterseals is like family to me.” His twins, Aidan and Alaina, went to the Little Rock Developmental Preschool, and Aidan still receives services from Easterseals Arkansas as a young adult.

“I know firsthand how important Easterseals Arkansas is to the families we serve. And, of course, I represented Easterseals while at my former law firm for over 20 years, so it feels like the perfect place to call my work home.”

Ivers says he looks forward to helping Easterseals grow and navigate the many changes and challenges that our organization is facing. “It won’t be easy, but I believe CEO Ron Ekstrand is setting a strategic course that will help us not only survive but thrive.”

CEO Ron Ekstrand says, “As we reopen programs and look to expand our services beyond Central Arkansas, David will be an incredible asset to our team. He knows the state, disability law, and leaders at providers across the state.”

Ivers comes to Easterseals on a full-time basis with a keen ability to identify and develop key policy proposals and predict impact on businesses and consumers. He has lengthy experience on legislative teams for multiple healthcare provider associations. In addition, he is a seasoned presenter on healthcare topics and has many published articles and co-authored a book for physicians. He is the winner of the Burton Award for an article on care coordination.

While at the law firm, Ivers initiated the drafting and negotiation of many laws, including:

• Arkansas’ Medicaid Fairness Act, establishing due process rights for Medicaid providers;
• Peer Review Fairness Act, establishing due process rights for physicians on hospital medical staffs; and
• Health Care Consumer Act, establishing protections for patients in managed care plans.

Ivers is a 1992 graduate from University of Arkansas at Little Rock’s William H. Bowen School of Law and a 1984 graduate of Arkansas State University with a Bachelor of Science degree in journalism and minor in political science.

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