Improving Post Secondary Opportunities for Individuals with Down Syndrome

July 18, 2017 by Courtney

When Laura Lee graduated from high school in 2001, there were no college programs in her state for students with intellectual disabilities (ID).

“Far too often, what is typically available for these students are ‘transition programs’ in high school that are isolated and a pipeline to living a life of poverty and either languishing at home or working in segregated sheltered workshops receiving below-minimum wage,” says Stephanie Smith Lee, Laura’s mother and Interim Policy Director for the National Down Syndrome Congress.

The Lee’s believed Laura and all students with Down syndrome deserved better. So, they petitioned George Mason University to start a pilot program and advocated nationally for more inclusive post-secondary programs. Laura became one of the first graduates of Mason LIFE Program, and today there are more than 260 college programs in 47 states for students with intellectual disabilities (ID).

Laura Lee’s resume was impressive, even for someone without a disability. It included her graduation from George Mason University, her work at the World Bank, volunteering at a food bank, and becoming a nationally recognized self-advocate giving speeches nationwide.

In March 2016, Laura Lee passed away in her sleep. For thousands of people nationwide who mourned Laura’s passing, she had become a symbol of what can be accomplished when high expectations and advocacy meet. And Laura’s mother did not stop advocating upon her death.

Laura and Stephanie Lee presenting together

“She’s the inspiration for my continued work,” Stephanie Smith Lee says.

As Interim Policy Director for the National Down Syndrome Congress, Lee is now in support of a newly released U.S. House of Representatives bill that will improve upon the Higher Education Act. Lee was instrumental in helping push through improvements in 2008, when the law was reauthorized. At that time, legislation was included to allow students with ID to apply for financial aid for the very first time, as well as the funding of model post-secondary programs for students with ID.

The new House bill released last week would increase inclusive post-secondary opportunities for students with ID. “One big change that will create a more inclusive environment is that model post-secondary programs that receive federal funding to educate students with ID must now offer inclusive housing on campus,” Lee explains. The bill would also change language in the law to require model programs to focus not just on academics, but career development as well.

The House bill would be attached to the reauthorization of the Higher Education Act expected this year, and would include the following amendments:

Using competitive grants to train faculty to deliver accessible instruction.
Establish an Office of Accessibility at every Institute of Higher Education.
A new grant program to implement Universal Design for Learning (UDL) .
A new commission to increase accessible materials and technologies.
Updates to data collection activities.
Updates to the program that funds Institutes of Higher Education that educates and integrates students with intellectual disabilities.

U.S. Representative, Mark DeSaulnier (D-California), who sponsors the bill says: “This first of its kind legislation takes a comprehensive approach to providing students and institutions with improved training, greater resources, and expanded services—bringing us one step closer to ensuring that all Americans have the opportunity to earn a degree, find a job, and achieve the American Dream.”

The National Down Syndrome Congress fully supports the improvements. “Students with intellectual disabililities want the opportunity to go to college like their siblings and friends, to learn, to experience independence, and become employed after graduation. Postsecondary opportunities for students with intellectual disabilities offer a new path to academic access, social inclusion, and working and living as independently as possible in the community,” says Lee.

Laura Lee with her mother, Stephanie Smith Lee in 1992

The 2008 reauthorization of the Higher Education Act had very strong bipartisan support. So far, the current bill only has Democrats sponsoring the bill. Still, Lee hopes that there will be continued bipartisan support for further improvements for post secondary inclusion.

“I’m so exciting to see how far we’ve advanced since Laura and I started advocating so many years ago. So many more students have opportunities, and have gotten jobs and live in their communities. They have friends in the community and are contributing members of society. But we’re still not where we should be. The current bill will help pave a better path forward,” says Lee.

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

June 20, 2017 by Courtney

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!

Grassroots Advocacy Empowers Parents to Fight for Inclusion

June 15, 2017 by Courtney

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!”

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

June 11, 2017 by Courtney

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.

How Homeschooling is One Path to Inclusion for Some Students with Down Syndrome

June 7, 2017 by Courtney

Guest blogger, Geralyn Spiesz, shares her thought-provoking journey of homeschooling her son with Down syndrome:

In some ways I feel as if I have always been a homeschooler.

My eldest son had an insatiable desire for more information, so evenings and weekends were spent reading, trips to the library, projects, and museums. My next son followed suit and although he did well at school, I couldn’t help notice his interests were not in the books but in experiences. We spent time doing all sorts of things to augment time spent sitting and listening in a classroom.

When Lucas was born with Trisomy 21, I was fortunate enough to find literature very early on from The Institutes for the Achievement of Human Potential. It changed my entire perspective.

I was sold on the fact that I could teach my son to read at 1 year, since reading is sensory and not academic. I could create an environment where every movement he made, every intention he had, would result in success. I could get him to walk and crawl miles everyday to improve brain cross-patterning and speech. I did, and by age 3 it was clear to me that whatever we were doing was working. Lucas was growing, developing, learning, and was very happy!

The idea to homeschool started to take shape and I had a huge advantage. Lucas could already read, spell and count.

Lucas turned 4 on August 30 and I had decided that we would embark on our “Kindergarten homeschool year.” I had nothing to lose. He wasn’t old enough for real kindergarten. If it went horribly I could send him to school the following year.

I poured over homeschool books, blogs, and curriculum, but I never consulted the special needs resources. I figured, all children’s needs were special and homeschool is about tailored education. I just picked and chose materials that I knew would be a good fit.

So, that first trial year, I chose mostly 1st grade curriculum for reading and math. We also did interesting things from history, science, and lots of art and music. Lucas worked on handwriting, as well as his neurodevelopment program and running daily. By the end of that year it was absolutely clear this path was necessary.

I was worried and conflicted about things like socialization. But here’s the thing, inclusion for us is the goal not the method.

Lucas’s academic ability is high, but his processing ability requires improvement to allow him to sit in a classroom and listen. His ability to maintain attention and switch attention must improve before he can sit at the lunch table and follow a conversation. If I forewent teaching Lucas as I knew he needed in a distraction-free environment, while focusing on improving neurodevelopment, he would never truly be integrated into a class.

As an OT I realized that Lucas could certainly learn routines by being in a classroom. Things like staying in line, keeping hands to himself, following the leader, etc., were certainly very important, but when the questions morph from “What color is this?” in kindergarten, to “Why do you think the artist chose that color?” In 3rd grade, the wheels would fall off the cart. Not because he couldn’t learn, but because he wasn’t neurologically ready for that level yet. It would have been like putting a 3-year-old in 3rd grade. I could not sacrifice a relatively good academic trajectory waiting for his visual and auditory attention and processing to improve.

When the year passed Lucas could handily complete all of the 1st grade work (he was not yet 5). But he still bolted away from me at the supermarket and was not able to attend in a busy environment, further solidifying my decision to homeschool. It would allow me the ability to continue teaching him academics and work on neurodevelopment.

Socialization happens in tons of places.

At parks, at the the grocery store, at home within the family unit, at parties, etc. Socialization is exposure and opportunity. Lucas takes skating lessons, and plays baseball for the town. He is at the park most days of the week and has a huge extended family.

In addition, Lucas attends a learning center for homeschool families twice a week where he takes science lab, Latin, history, and literature. I attend his groups with him as he still is unable to learn in an auditory environment, although we are making progress!

At the time I made the decision to begin homeschooling, I would have been fooling myself to think that my son was neurologically wired for a same-age peer relationship.

Lucas with his older brother, who’s also homeschooled.

Homeschooling with Lucas went so incredibly well, that I pulled my middle son (the one who couldn’t sit still…had a ton of energy…and asked a million questions) out of school and homeschooled him as well. He went from barely proficient in math on the fourth grade standardized test to the 98th %ile the following year. Turns out he was bored. I chose a very aggressive math curriculum that goes quickly, with repetition built in, and he took off. He is going into 8th grade and this will be our last year of homeschooling. He will go to the same high school as his older brother. He needed to learn the way he was wired to learn, the same is true for all children with or without an extra chromosome.

Lucas and I work very hard in school and his neurodevelopment program. He is just finishing 3rd grade. In some areas he is working at a late 4th grade level, and others at a late second grade level. If we’re honest, this this actually pretty typical of all of us. we are really good at some things and some things take more effort.

Our goal is to homeschool until 8th grade and for Lucas to sit for the entrance exam to the same private high school his brothers attend.

We would like to see him graduate with an academic diploma. We want Lucas to have neurodevelopment to understand sarcasm at the lunch table, and attend to the ping ponging conversation in a noisy cafeteria. Our goal is for him to learn by listening to a lecture instead of having everything in print for him to read. We want him to be happy and achieve all he can to do all he wishes.

The decision to homeschool a child is massive and it’s effects should not be underestimated.

I worry when it takes a long time to get a concept. But I’m getting better at realizing it isn’t Lucas’s inability to learn, it is my inability to teach it using the right method and I need to change my approach. This would not be possible in a classroom situation with multiple children. I also realize that at some point in the future we may have to make a different decision, but for now we wouldn’t change a thing.

Geralyn Spiesz is a passionate homeschooler who created the Facebook page “DSAP Homeschool,” which provides discussion and resources about homeschooling children with Down syndrome. She uses Dr. JoQueta Handy’s Brilliant Learning Program as a framework for her son, Lucas’ learning.