Our Family LENDs Unique Perspective to Medical Professionals

The Monday after a big birthday party is not the best day to have strangers visit my home. My house looked like Toys’R’Us exploded inside, and there was still homemade icing stuck in awkward places throughout my kitchen. Still, I made a promise, and I’m glad I did.

It was a “Day in the Life” of a family with a loved one with Down syndrome.

The Leadership Education in Neuro-developmental and related Disabilities (LEND) program asked our family to invite a clinical psychologist and disability self-advocate into our home so they could see life outside your typical treatment facility.

Clinical Psychologist, Kaitlyn Eichinger, with Troy’s brother, Hunter

“I’m so excited to get to see life from you and Troy’s perspective. I think this will change how I do my job in a clinical setting,” explains clinical psychology graduate student Kaitlyn Eichinger.

Most doctors, therapists, and clinical psychologists view disability from a pathology standpoint. When your goal is to diagnosis and treat, it’s sometimes hard to see past the disability. Also, medical professionals can sometimes forget that the parent is an expert on their child’s needs, and can provide invaluable insight.

Read Related Post Here: Ending Organ Transplant Waitlist Discrimination

The LEND program recruits graduate students, post-doctoral fellows, and community leaders for a year-long interdisciplinary training program focused on improving the health of children with developmental disabilities. Spending time with families as part of the Family Mentor program is only part of the year-long LEND training.

Cincinnati Children’s LEND program is one of 52 programs nationwide, but our local program is the first in the nation to include self-advocates as trainees. Rachel Rice will meet with our family alongside Kaitlyn Eichinger, and will do all the same coursework.

“I like to prove people wrong about my disability. I was told I’d never be able to do office work, but I’ve worked in an office setting for the last five years and now work with Warren County Board of Developmental Disabilities,” says Rice. I thought Rachel brings a great perspective herself. It’s not often I get to hang out with adult self-advocates with disabilities other than Down syndrome, and Kaitlyn and I both agreed she rocked it!

Read Related Post Here: The Link Between Sleep and Learning

Troy and his siblings were excited to welcome Kaitlyn and Rachel into our home. They showed both ladies that Troy is more alike than different, and is an invaluable member of our family.

The two trainees will get a chance to meet with us two more times, in settings outside our home like a therapy session or playground. I’ll be sure to continue to share our journey with Kaitlyn and Rachel. Although they may only be getting one family’s perspective, it’s still gives them a glimpse into the personal lives of their patients.

There’s LEND Programs in all 50 states. If you’re interested in becoming a Family Mentor click here.

September 18, 2017September 18, 2017

Time to Call, Tweet, and Email Your Senator…AGAIN!

It’s baaaccckkkk! A new bill to repeal the American Care Act, and in turn cut Medicaid.

Remember the endless summer? When we all tirelessly advocated to kill the bill, and it worked. A new, worst bill is gaining traction in the Senate. Look at the graphic below to see what it would do:

It seems Republican Senators are hell-bent on keeping their campaign promise, but in doing so they’re also threatening to restructure and CUT Medicaid.

Why should you care about this bill? Because it will have a negative impact on people with disabilities. People with Down syndrome often use Medicaid throughout their life, even if their parent doesn’t meet the financial threshold for consideration. That’s because most school districts use Medicaid dollars for speech, OT, PT, bus and other services. Medicaid dollars are used in transitional services when our loved ones become adults. That means they can qualify for a job coach, transportation, and housing supports all because of Medicaid.

See Related Post Here: Why Medicaid Cuts Would Devastate the Down Syndrome Community

Here’s how this specific bill will impact the disability community:

Puts per capita caps on Medicaid, leading to devastating cuts in funding
Eliminates the Medicaid expansion and marketplace subsidies and replaces with an inadequate block grant
Allows states to waive protections for people with pre-existing conditions
Allows states to waive the requirement to provide essential health benefits (like mental health and substance use services, rehabilitative and habilitative services, and maternity care)
Penalizes states that have invested in their Medicaid system

You can read the actual bill here.

See Related Post Here: We Meet With Ohio Senator Portman’s Office in Last Ditch Effort to Save Medicaid

We’ve been here before, you know the drill! Your marching orders are as follows:

CALL (202) 224-3121

EMAIL addresses

TWEET handles

Your U.S. Senator and tell them how important Medicaid is to you and your family. Ask them to oppose the Graham-Cassidy bill or any other bill that would cut or cap Medicaid. Use the follow hashtags: #SaveMedicaid #NoCutsNoCaps

We killed the bill once. We can do it again! But it’s going to take a village!

August 28, 2017August 29, 2017

Serving Up Sportsmanship Through Inclusive Tennis

Tennis requires a fast response time, hand-eye coordination and a lot of stamina. The non-profit, Buddy Up Tennis, is serving up these skills to athletes with Down syndrome and creating a community of tennis lovers.

Serve it, smash it, win it, love it!

The 90-minute weekly session I watched locally would have anyone’s heart rate up. More than 20 athletes with Down syndrome teamed up with “buddies” who also enjoy the sport. There was a half an hour of high-intensity calisthenics, another half hour of basic skill building, and then time to play the game.

“Buddy Up Tennis is my favorite MVDSA (Miami Valley Down Syndrome Association) activity. My buddy, Jeff, is so funny and I accidentally hit him with the tennis ball a couple times this Saturday but he just laughed,” explains athlete Walter May. Buddy Up Tennis even led to a job for May at the local tennis club.

The non-profit was started in 2008, when an Ohio mom, Beth Gibson, was playing tennis with her typical child and noticed her 3-year-old son with Down syndrome loved watching them play. “Will was always fascinated with tennis. Staff members at our tennis club soon volunteered to teach tennis to Will, and researched techniques for teaching children with Down syndrome in order to do so. As a result of this research, the need was identified for an organized tennis and fitness program for individuals with Down syndrome,” Gibson explains.

No experience is required and all individuals with Down syndrome 5-years-old and up are welcome to play. The program teaches the following skills:

specialized training in the fundamentals of tennis
improvement in muscle tone, core strength, agility, coordination skills
opportunities to expand social and emotional skills through sportsmanship and team building
connection to the Down syndrome community in your area

Buddy volunteers are at the heart of the Buddy Up Tennis program.

The buddies include a combination of tennis professionals and typical peers who love the game. Anna Jones, head coach for Dayton’s Buddy Up Tennis says the local group has a strong following. “It’s a great opportunity for everyone involved,” Jones says.

My Dad is visiting from California, and is an old tennis pro from way back. He was chopping at the bit to get out their and play. By the end, he’d made fast, new friends with 14-year-old Aljoon, who happens to rock an extra chromosome. “What an awesome program! I can’t wait for Troy to be old enough to play. Tennis is a great sport and these kids are gaining life-long skills they can use to stay active,” my dad happily describes.

In 2016, the United States Tennis Association named Buddy Up Tennis the “Adaptive Tennis Program of the Year.” Today there are 17 locations throughout the nation from Ohio to Texas.

Find out if there’s a Buddy Up Tennis program in your area or how you can start your own here.

August 21, 2017August 29, 2017

Not Dead Yet!

Imagine needing a life-saving kidney transplant, and being denied access to an organ transplant wait list.

This is the reality for some Americans living with a disability. They need a life-saving organ transplant, but doctors tell them they’re not a good candidate. Why?

Often the reason is discrimination:

Some doctors may refuse an organ transplant for individuals with disabilities that need help to follow post-transplant treatment plans (even if they have already secured post-op help).
Some doctors may believe that individuals without a disability should have higher priority to organ transplant wait lists.

But tell me, who gets to decide who’s life is more significant than another’s?! This is not only a right to life issue, but a civil right’s issue!

James Wellman is living this nightmare right now. The 26-year-old with Down syndrome is likely to die soon because he his kidneys are only functioning at 12%. Doctors won’t let him on an organ transplant wait list. His family is distraught. Watch his story below.

The American with Disabilities Act (ADA) provides broad protections against healthcare discrimination, but there’s no federal enforcement when it comes to organ transplant discrimination. Often their loved one with a disability dies while families try to find recourse through ADA.

That’s why states must step up to ensure people with disabilities are protected from discrimination.

I introduced possible legislation to my state legislator, and after agreeing it was needed he spent the summer drafting the bill. Ohio State Representative, Niraj Antani, plans to introduce the bill to prevent organ transplant discrimination in my state next week. You can view the draft bill here: Organ Transplant Waitlist Anti-Discrimination Bill

Only 5 states (California, Massachusetts, Maryland, Pennsylvania, and New Jersey) currently have organ transplant anti-discrimination laws. Three other states (Delaware, Kansas, Oregon) currently have a bill working it’s way through state legislatures. All of these bills are bipartisan.

With help from disability groups across my state, as well as doctors’ organizations, I hope we’re able to lead the charge against discrimination for our loved ones here in Ohio…

Because they’re #NOT DEAD YET!

If you’re interested in introducing an organ transplant anti-discrimination bill in your own state visit my “Advocacy” page under “Resources.” The NDSS created a toolkit for advocates with model legislation and other helpful resources on this topic.

I will post updates of our efforts here in Ohio as well.