We Meet with Senator Portman’s Office In Last Effort to Save Medicaid

Disability advocates share our Medicaid story with Senator Portman’s staff member, Robert Braggs (far left)

My son, Troy, and I met with Ohio Senator Rob Portman’s office to share our Medicaid story. We joined five other parents and their children who have a disability.

We met with a staff member, because Senator Portman (R) had just flown out of Cincinnati the day before to attend a Republican caucus luncheon to talk about the American Health Care Act. The bill will repeal Obamacare and cut more than $800 billion from Medicaid.

The Senate version of the bill has been shrouded in secrecy. My disability advocate friends who work on Capitol Hill told me that the public will likely not see the contents of the bill until right before it’s brought up for a vote, before July 4th.

It passed in the House along party lines, although my Representative Mike Turner (R-Dayton) voted against the House version. Congress wants to pass the healthcare repeal bill fast for two reasons: Republicans campaigned on repealing Obamacare and many want to move on to President Trump’s tax reform bill.

Unfortunately, this hastily drafted bill will be devastating for the disability community.

Troy and I on our way to Senator Rob Portman’s office

The $800 billion in Medicaid cuts goes further than rolling back Obamacare Medicaid expansion. The “per capita based caps” would completely restructure how Medicaid is funded, leaving cash-strapped states to pick up the tab.

Troy and other individuals with Down syndrome rely heavily on community and home based services under Medicaid for early intervention, school related therapies, transportation to work, job training, and independent living supports to name a few. Per capita based caps would force states to end these optional community and home based services, because they would have to use what money’s left for acute health care.

Our meeting with Senator Portman’s office is an important one, because the Republican from Ohio is on the committee drafting the Senate version of the AHCA bill. He’s also considered a potential flip vote.

In a statement regarding the bill Portman said “I’ve already made clear that I don’t support the House bill as currently constructed because I continue to have concerns that this bill does not do enough to protect Ohio’s Medicaid expansion population.”

But he also submitted a proposal supporting cuts to Medicaid expansion that are slowly phase out over seven years, instead of three years under the AHCA House version of the bill.

Ohio’s Governor, John Kasich (R), is also concerned about the AHCA bill and it’s impact on Medicaid. Here’s part of a letter to Congress that he penned along with 5 other Governors: “Unfortunately, H.R. 1628 calls into question coverage for the vulnerable and fails to provide the necessary resources to ensure that no one is left out, while shifting significant costs to the states.”

Troy deserves a self-determined life of choice, but he’ll need support to get there. Troy doesn’t need a hand out, but a hand up.

Senator Portman’s staff member, Robert Braggs, was very kind to listen to our stories. He told us he would pass along our concerns to the Senator, but there was no clear indication as to how he might vote. Braggs did not indulge any of the Senator’s thoughts on the bill. To those in the room and across America, the bill is still an unknown.

It’s so frustrating to have your child’s future in the hands of those who don’t understand the struggles special needs parents face. We rely on a village of support, and we don’t take for granted the power government has over our children’s fate.

Ronald Reagan began the Medicaid waiver system for children with disabilities when I was born a generation ago. In that time life expectancy has more than doubled for individuals with Down syndrome, from 25-years-old to 60. That’s not coincidental. Government can and has improved the lives of our nation’s more vulnerable. We can’t go back!

June 15, 2017June 13, 2017

Grassroots Advocacy Empowers Parents to Fight for Inclusion

One group of parents in California’s Bay area say inclusion won’t happen unless they ban together. About four years ago they started an informal advocacy group to empower parents to fight for inclusion.

Ellen Hovey is one of the founders of the Educational Advocacy Group. Her 17-year-old son, Jeremy, has Down syndrome and is in a transitional program now.

“I had to fight for inclusion and I want other parents to understand the positive impact it has had on my son. I started this group because too many parents don’t understand their child’s rights.”

The group is truly a grassroots effort. They get word out through a private Yahoo group, social media, and their local Down syndrome association. The last Friday of every month, parents meet at Hovey’s house to discuss IDEA, IEPs, FAPE, LRE, due process. Basically, how to ensure their child receives an individualized education in the least restrictive environment.

“We don’t aggressively push inclusion on new parents, because it’s a lot of work and everyone has to decide what’s right for their child. We do council parents that schools are a business. Their job is to get as many kids that need an IEP into places as cheaply as possible; with as little effort as they have to expend. You have to understand that going in.”

The educational advocacy group has anywhere from 5 or more parents a session. Hovey says they’ve gone so far as to help parents through due process, by helping with lawyer and advocate recommendations. And it seems to be working:

“The school officials started noticing a common effort for inclusion. We go into educational conference and teachers say ‘you’re one of those Down syndrome families and you’re all trying to get included,” Hovey describes.

Hovey’s best advice is to not look for the “perfect school,” but instead learn your child’s rights and change the school you’re in.

“I shy away from recommending a particular district. For example, my school district was open to inclusion, but then we got a new superintendent and special education director and things took a turn for the worse. You have to learn how to advocate, and change the district you’re already in,” Hovey argues.

Hovey reminds parents that attend that she and other leaders of the group are not certified advocates. “We’re just parents that want to help out those that come after us. We’ve been through the system, and feel like we have something to share.”

Hovey is now focusing on transitional services and employment for her son, Jeremy. She says she wishes there was a parent group for this stage of life too. “It’s always important to stick together and fight for what’s right. Our children deserve it!”

June 11, 2017June 11, 2017

“Faith” in Inclusion Leads Student with Down Syndrome to Make History

A standard high school diploma can seem out of reach for students with Down syndrome. But with inclusion and a lot of hard work, 19-year-old Faith did just that!

Faith (bottom left) performing with her typical peers

Faith became the first person with Down syndrome to graduate with a regular high school diploma in Martin County, Florida School District. Also unprecedented, she was included in general education throughout her educational career.

“I’m really happy to graduate with a standard diploma. I learned chorus, I learned drama. I like drama, I like to act. I was in Romeo and Juliet, Wizard of OZ, Beauty and the Beast. I was in Jubilate chorus too. I like all my friends,” Faith says.

Faith was on track to earn a special certificate of completion until 2014, when Florida special education law changed to allow students with disabilities to try for a standard diploma. Students with disabilities can use alternate assessments and something called “access points,” which allows them to access the general curriculum in a modified way with supports. They still must pass alternative assessments and earn enough credits to receive a standard diploma.

The school district told her mom, Paulette, that on top of being the first student with a significant disability to receive a standard diploma, Faith was the first to use the “access points” in a general education setting. “That has always seemed odd to me, that a special curriculum offering access to the general education curriculum would cause the student to be excluded from the gen ed class,” Paulette describes.

Paulette said inclusion wasn’t easy. She received a lot of push back when Faith entered kindergarten and again as she entered middle and high school. But she always set high expectations and was able to find at least one educator who supported their efforts or had an open-mind.

“At Faith’s first IEP meeting, her preschool teacher remarked that Faith had done well in the preschool, developed friendships, learned the alphabet and how to write her name. Then this wise and wonderful woman said: ‘I am not trained in special education, no one is in our private school. Faith has been successful. Certainly with all the resources of the public school system she can continue to be included with typical children,'” Paulette describes.

Faith (bottom, third from the left) performing with the Senior Jubilates

“At the beginning of 8th grade our supportive inclusion specialist called the high school to tell them to get ready, they would be including their first student with Ds. The ESE director at the high school laughed and told her they didn’t do that. The first year of high school was rocky, but then the woman retired and the new director was fully on board with making history!” Paulette remembers.

Faith’s inclusive experience allows her to be comfortable in many situations. She’s danced and acted alongside her typical peers. With appropriate supports and modifications she dissected a frog in a general education Biology class, which she described as a “yucky experience.”

“I have friends in drama club and Jubilate. I have friends from economics, history, math. I learned all things and got A’s. My mom helped me to learn in other classes,” Faith describes.

“Faith has made a difference in the lives of many typical students over the years. She has changed the attitude of people she has shared the classroom with. They know that although it is challenging, people with Ds can learn and be a valued member of a group,” Paulette says.

Faith is set to begin vocational training at a local hospital with Project Search. Her goal is to be a musical theater actress, but says she wouldn’t mind working in a movie theater for now to earn money.

Faith’s mom hopes that their story will lead other parents to fight for inclusion. “I really want parents of younger kids to follow the path we have blazed. Faith is a pioneer and I have led the wagon train. I am willing to help parents who want help with IEP meetings or just for a listening ear. I don’t want our experiences to be an anomaly. I want us to be an example of success,” Paulette explains.

As for Faith, she has her own advice for students with Down syndrome that want to follow in her footsteps: “My advice to other kids with Ds is get a standard diploma. Take drama, chorus, English, economics, history. My teachers are impressed with me and my activities. I learned about Beowulf, Hamlet, Romeo and Juliet and I did projects. Read a lot of books. That’s it.”

Faith and her family at graduation. Faith’s mom, Paulette, to the right of Faith.

June 1, 2017May 30, 2017

Small Talk Leads to Big Rewards

Our group of adult self-advocates are learning that small talk is where real opportunities begin.

These adult self-advocates meet once a month to hone their communication skills. It was an idea I got from a program out of Maryland. Our mantra is “I can,” and you can read about our first session here.

Our end goal is for these nine self-advocates to act as our 15th Annual Buddy Walk Ambassadors. They’ll educate attendees about Down syndrome and the programs our local Down syndrome group provides. They will also escort VIP guests like Ohio Representative Niraj Antani. Since we know where we’re going and what we’re doing (advocating at the Buddy Walk), now we’re learning how small talk will get us there.

Small talk is like a free, unknown gift. There’s no initial cost or risk, but the outcomes are endless.

Small talk can lead to just a pleasant exchange with a stranger or an amazing job offer. You’ll never know what you’ll get unless you try.

But conversational skills require you to think on your toes. This can be hard for anyone, and it was an obvious challenge for some of our self-advocates.

35-year-old Joe had a 14-year start on the rest of us!

He’s a loyal employee of Kroger grocery store for the last 14 years, and is now a natural at making small talk. I watch him do this every time I visit Kroger, and he is a great coach for our other self-advocates.

Our amazing Theater Educator, Stephanie Radford (heavy on the “RAD”), added another tool to our communication toolbox with a conversational acronym: FORD.

“If you get to the Buddy Walk and can’t think of anything to say to Congressman Antani, remember FORD,” Stephanie urges.

Small talk usually revolves around FORD, which stands for (Family, Occupation, Recreation, and Dreams). These are always safe topics to bring up to a complete stranger.

By the end of our session we created a web of small talk with questions like:

“What do you like to do with your family?”

“Do you work?”

“What’s your favorite hobby?”

“If you won the lottery what would you do with the money?”

It seems so simple, and studies show that small talk actually makes us smarter. It forces you to take someone else’s perspective and boosts our ability to problem solve.

Another great point Stephanie makes, is people love to talk about themselves.

How better to engage Buddy Walk attendees and get them to listen to our advocacy message than to ask them about themselves first.

I love how each of these self-advocates are so open to learning new techniques that will help them become better communicators. It takes a lot of courage to step out of your comfort zone. That’s why we love the informal workshop approach, because they have a safe space to practice skills like small talk.

15th Annual Buddy Walk: HERE WE COME!

May 30, 2017December 11, 2017

InclusiveU: What College Should Look Like for Students with Intellectual Disabilities

Many people agree, college is some of the best years of life.

It’s the first time we live independently. We make decisions that will shape our life forever. It’s a place were lasting relationships are made.

This experience is no different for Josh, a recent graduate of Syracuse University.

He cheers for the Giant Orange in the Otto’s Army section of the SU football stadium. He hangs out with his friends at the UU and interned at SubCat, a professional recording studio off campus.

“SubCat was my favorite internship. I could find out information about getting a job and how to work with the people involved in the job, like the boss or co-workers,” Josh says.

All of these experiences are extraordinary compared to your typical college student, because Josh has Down syndrome.

There are currently more than 260 college programs available to students with intellectual disabilities. The cream of the crop is Syracuse University’s InclusiveU program in New York state.

Related: Yes, My Son with Down Syndrome Can Go to College

I got the privilege to hear InclusiveU executive director, Beth Myers, speak at the first annual NDSS #DSWorks conference in Washington, D.C. I learned how the program fully integrates students with intellectual disabilities into the fabric of campus life.

InclusiveU is one of only a few college programs that practices full equitable inclusion.

This means students with intellectual disabilities declare a major, enroll as an audit student for certificate (which is open to all students), take the same classes as their typical peers, and live with them in the dormitory.

Josh recall’s his favorite professor: “My favorite memory was working on the lights with David Bowman, one of my teachers. He was a really fun guy to be with. Doing the lights for the stage is one of my goals for the future and part of my major.”

A peer-to-peer program helps to facilitate this inclusion.

Josh says, “I got to go to classes, I would study with my peer partners, Cindy and Lindsay. My favorite classes were the classes at Syracuse Stage and stage techniques, were really fun. I graduated with a certificate in Visual and Performing Arts.”

Modifications and adapted coursework allows students to experience a wide-range of courses on campus.

Students have full access to the course catalog, but they can’t take Writing 400 unless they’ve passed the prerequisite courses.

InclusiveU uses Project Search to help students with independence skills. “I love it. The reason why I loved Project SEARCH was because I could explore all the job opportunities I liked,” Josh explains.

The 42 students currently in the program are expected to complete three employment internships on or off campus. They also take seminars in communication skills, professional dress, employment, and self-advocacy.

Entry into the program includes a written application and in-person interview. The student doesn’t need a high school diploma, and the program doesn’t look at GPA or SAT scores. InclusiveU accepts students who are non-verbal, non-readers, and who have low mobility.

Related: Inclusion for Students with Down Syndrome is Just a Click Away

During the #DSWorks seminar I learned that the biggest barrier to more higher education opportunities like InclusiveU is money (isn’t it always?).

Tuition for InclusiveU can run upwards of $23,000 a year. Medicaid waivers, pell grants, scholarships, and federal financial aid are now available to students with an intellectual disability. Still, the cost can be prohibitive. And starting a program like this takes a lot of advocacy and a lot more money.

For Josh, the experience was priceless!

He learned to live independently and hopes to use the skills he learned in his eventual career: “I want to work at pop concerts (Lady Gaga, Ke$ha) working on live audio, lights and special effects. I would like to also work on a TV show specifically a reunion show (Brady Brunch, Full House) being an assistant.”

“I will miss the people at Syracuse University and InclusiveU when I move to Florida.”

Congratulations Josh! You’re an inspiration. Inclusion Evolution and the Down syndrome community wishes you the best of luck!

Do you know someone with Down syndrome that is attending college? Tell me about your experience below or private message me.

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Tag: advocacy