Disability Advocates Share Resources for Life After High School

For those with disabilities and their families, leaving high school can be like falling off a cliff. Only 17% of people with disabilities are employed in America today; that’s compared to 65% employment for the rest of Americans. Many people with disabilities never received a regular diploma, or proper preparation for life after high school. Now a group of disability advocates want to pave a better path forward.

“My brother has a disability. Growing up, it was hard watching the struggles he and my family faced. We had to move states to get him the resources he needs. When I left home for college, I kept thinking this would have been great for Scotty. But his school didn’t prepare him. Nobody was teaching him how to advocate for himself. My mom struggled to get him the resources he needed to transition to life after high school,” describes Ricky Price, co-founder of The Next Step Programs.

Read Related Post: A Summer of Inclusion at Camp PALS

It was after working at Camp Pals, a summer camp for teens and adults with Down syndrome, that Ricky Price and fellow camp counselor, Josh Fields, agreed something needed to change. These ambitious 20-somethings started The Next Step Programs, a nonprofit that provides resources and workshops geared towards transition. “There’s too few opportunities for these young adults,” says Ricky.

TNS Co-Founders, Josh Fields (left) and Ricky Price

The Next Step Programs (TNS) has created a fantastic online tool for families in search of transition resources. “When students transition out of high school, parents are left to do a lot of digging to find out about resources post-high school. We wanted parents and self-advocates to have a place they could go to find resources with one click. We did the research for you! It includes resources for the states of Michigan and Pennsylvania so far,” Ricky explains.

The resource map includes many transitional services including legal, educational, independent living, transportation, and competitive employment opportunities. You can find the map here. “It’s labor intensive to gather all these resources in one place. We’d like to have the funds to expand to different states, and create a hard copy of the map,” Ricky says.

Read Related Post: Legislation Could Continue to Increase College Opportunities for Students with Intellectual Disabilities

TNS founders have a lot of other ideas for transition resources. With Masters degrees in disability-related services, both Ricky and Josh realize the immense need for more programs after high school, as well as connecting existing programs with people in need. TNS started a video blog series to show case the struggles and triumphs of transitioning youth. “It’s important to share their struggles and successes. We plan to follow up with these self-advocates and their families. We also want to interview family members, teachers, and experts in the field,” Ricky explains.

TNS is also starting a workshop series this spring focusing on the transition from high school to college or competitive employment. “We are inviting speakers to talk about independent living supports, degree vs. certificate track, employment, transportation, and self-advocacy training,” Ricky says.

Ricky believes transitional services are starting too late, and not teaching the right skills for life after high school. “Transition IEP goals should be written by the time a student is 14-years-old. These goals shouldn’t teach specific job skills like how to dust and mop. Anyone can learn those skills later. What’s harder is teaching soft skills like living on your own, advocating for yourself, doing your own finances, finding and keeping a job,” Ricky explains.

Ricky’s brother Scotty did end up going to college, but Ricky says no one prepared him or taught him those all important soft skills. “He didn’t want to use services for people with disabilities at college, because he didn’t want to be defined by his disability. He never advocated for himself. Although he has a good job now, I wish he would have had a better road map for life after high school,” explains Ricky. Now, through TNS, Ricky and Josh are building a better future for others with disabilities one click and workshop at a time.

TNS is having it’s 4th annual Gala to raise funds for expanded programming this summer. You can also donate online here.

Are you having a hard time navigating the transition from high school to post-secondary education or work? Would a non-profit like TNS be helpful in you or your child’s journey? Comment below.

February 19, 2018February 19, 2018

Legislation Could Continue to Increase College Opportunities for Students with Intellectual Disabilities

Like many soon-to-be high school graduates, college is on Patrick Foraker’s mind. Just this week he interviews at Clemson and George Mason.

Patrick is just one of 3.3 million students applying to college in the U.S. this year, but just the fact that Patrick gets to go to college is an extraordinarily novel idea. “When he was born, these programs did not exist,” says Beth Foraker, Patrick’s mom and disability advocate.

Inclusive post-secondary educational opportunities for students with Intellectual Disabilities (ID) really started taking off after the reauthorization of the Higher Education Opportunity Act (HEOA) in 2008. At the time, the HEOA began allowing students with ID to qualify for Pell Grants, Supplemental Educational Opportunity Grants, and the Federal Work Study Program for the first time. It also established a new grant program that funds the development of programs tailored specifically to college students with intellectual disabilities across the country.

Read Related Post: College Scholarships for Students with Down Syndrome

Now, disability advocates are fighting to keep those, and other, important provisions in the current reauthorization, which recently moved to the U.S. Senate. “Parents and students need to reach out to their Senators soon. Even if your child with Down syndrome is only a baby you can start planning, but we need your help to advocate,” says Stephanie Lee, National Down Syndrome Congress’ Senior Policy Advisor.

Stephanie says when her daughter, Laura, with Down syndrome graduated from high school in 2001, she dreamt of going to college. “But at the time there was only about 15 college programs for students with intellectual disabilities nationwide,” Stephanie says. From that point, Stephanie knew she would make her daughter’s dream of college come true, and she became instrumental in getting the provisions to include students with ID in the HEOA.

Stephanie says it’s not guaranteed that these important provisions will continue to be authorized, so we have to remind our Senators of the improvements made thus far. According to Think College, there are now more than 260 college programs for students with ID, and 61% of the students that graduate from these programs are competitively employed. That’s compared to an 85% unemployment rate for the rest of the ID community.

Read Related Post: What College Should Look Like for Students with Intellectual Disabilities

Stephanie is asking local, state, and national disability rights organizations to sign onto a letter to the Senate HELP committee, letting Congress know our community’s priorities for the bill. So far, 13 local and national organizations have signed onto the letter released last Friday.

Signatures to this letter to Congress need to be submitted by end of business on Thursday, February 22nd. To read and sign onto the letter click here.

Going forward, Stephanie says small improvements related to funding guidance should be made in the HEOA or at the Department of Education, and are detailed in the letter above. She says parents and community members can also improve these students’ odds. “It can be a challenge to start these post-secondary programs. I’ve been a part of starting several, and obviously start-up funding is the biggest challenge. But sometimes even a lack of understanding of why we need post-secondary options for students with ID can be an issue. Community colleges and universities need to know that inclusive programs have far reaching benefits for even typical students,” Stephanie says.

Stephanie Lee (right) with her daughter, Laura (left)

Although Stephanie’s daughter passed away a couple of years ago, she says her daughter Laura was able to see and speak about the benefits of the 2008 reauthorization of HEOA. “It’s very exciting when I read on Facebook parents are taking their child to visit college programs. Still, there are many places in our country with no post-secondary options,” Stephanie explains. She hopes new families with college in their sights will step up and advocate for the HEOA reauthorization.

Beth and Patrick Foraker plan to do just that. “There’s a reason they call life after high school for people with intellectual disabilities: Falling Off A Cliff. 85% of adults with ID are unemployed. The Higher Education Act needs to be reauthorized and it is not guaranteed that the TPSID funding will continue. These programs provide real options and a real chance at tackling that terrible statistic,” Beth explains.

To Learn more about the Higher Education Opportunity Act Reauthorization click here. Does your child with Down syndrome plan to go to college? How do you plan to make that happen? Tell me your story below.

February 13, 2018February 23, 2018

Advocate like a Mother

Tis the season for chocolate and wine and tears. While most mothers take this to mean a cheesy Valentines day celebration with their sweetheart, mothers (and fathers) of children with Down syndrome know what it really means….

It’s IEP season.

That means chocolate and wine is needed to hold back the tears. In the past week I’ve read at least 3 social media posts that started something like this: “My goal for today is to not cry at my child’s IEP meeting…” To you, mama, I say: let the tears flow. Eat the chocolate; pour an extra glass of wine.

“There is no more powerful advocate for children than a parent armed with information and options.” –Rod Paige

We are our child’s best advocate, which is why we cry. Because we actually get it! We understand our child’s true worth, and what’s at stake. And the numbers are abysmal. In the year 2017, ALL but one state reported more than 60% of students with Intellectual Disabilities (ID) spent 50% or less of their day in general education classrooms. Check out the report here (the numbers for inclusion in general education start at page 49). The end result is 80% unemployment for people with ID.

Read Related Post Here: The Immortal Mom: Why I Can Never Die

Yes, you need to arm yourself with information at the IEP table and advocate in a professional manner, but you also need to inject emotion and heart into a meeting that too many schools turn into a check-the-box, fast food version of education. They need to understand that your child is not just another box to be checked; that your child deserves to “Have It Your Way!”

So, what can you do to advocate for your child at their next IEP meeting, while keeping heart?

Bring an advocate: Never, never, never go alone to an Individual Education Plan (IEP) meeting. Bringing someone, anyone with you, gives you the freedom to cry and share why your child deserves more. The advocate provides an objective view of the meeting, and an important counter to school personnel. This person can take notes for you, ask questions that you planned to ask before you started crying, and rehash what happened over a glass of wine post-meeting. Find a COPAA trained advocate here. Your advocate could be a neighbor or good friend too.
Demand more than the fast-food version of the IEP process: My favorite quote of 2017 comes from Chief Justice John Roberts in the Endrew F. decision: “The IEP is not a form.” Simply put, the IEP is actually a living document. You have the right to change it and ask for more than what your state form requires. Ask a lot of “but why?” questions. Demand answers in writing. Keep reminding your child’s IEP team of the “I” in IEP.
Write it down: Especially if you think you’ll be emotional at an IEP meeting, it’s imperative to have the meeting recorded via video or note form. An advocate can write notes for you. Remember, if your concerns are NOT put on the record, they don’t exist. A verbal concern is lost forever in the IEP abyss. Make sure everything is on record and in your child’s IEP. You can add attachments to your child’s IEP at any time. Often an IEP overwhelmingly becomes the perspective of the school personnel. Interject your concerns in an official way, and leave the tears at the IEP table. Those recorded concerns will make a lasting impact, and creates a paper trail.

What are your concerns going into your child’s next IEP meeting? How do you prepare? Tell me about it below.

January 26, 2018January 26, 2019

By God’s Grace: One Mom’s Mission to Make Catholic Schools More Inclusive

Patrick was born 17 years ago with Down syndrome. At 3 he battled leukemia and won. But none of this scared Patrick’s mom, Beth, as much as the prospect of Patrick being excluded from their community; especially their religious community.

Patrick, center, with his family. His mom, Beth, is top right.

“I can remember a parishioner with Down syndrome in my Catholic parish growing up,” Beth says. “My mom used to say ‘it’s so sad,’ every time we saw him.” Ever since then, Beth says she felt this unusual sense that she would be touched by disability.

Beth with Sara today. Sara is now 32-years-old.

She later went on to teach a young girl with Down syndrome in her regular general public education classroom in the 1990s. “Sara was my teacher. She was so capable, and so amazing. It was my bigotry, my stereotype, my unknowing that got crushed daily by Sara’s will to learn and be included,” Beth explains.

“People with disabilities are a gift for the family and an opportunity to grow in love, mutual aid and unity.”- Pope Francis

When Patrick was born, Beth faced the typical medical model of disability: “They put a ‘no visitors’ sign up on my hospital room door, and everyone seemed so sad. There was no celebration.” But her experience with Sara taught her that her son shouldn’t be feared or ignored.

“I had this crazy familiarity that I knew him from birth. I showed my husband our son and said: ‘This is Patrick. He has Down syndrome, and he is just as he is meant to be’.”

Read Related Post Here: How My Son with Down Syndrome Pushes Me to be “That Mom”

Patrick, center, with his older sister and brother

Patrick’s family is completely immersed in their Catholic community. Living only six houses away from their local parish, it seemed natural that all the kids would attend school there.

“Since I taught a child with Down syndrome before, I knew it could be done and realized how life changing it was for teachers and students.” Beth approached her local parish and received their blessing to enroll Patrick in Kindergarten.

But Patrick struggled in kindergarten. “His teacher didn’t believe he belonged in her class,” Beth explains. Beth started attending the Network of Inclusive Catholic Educators (NICE) and got Patrick a full-time aide.

Read Related Post Here: What I Should Have Asked When My Son was Born With Down Syndrome

Soon Patrick thrived: “He learned to read, and made great growth. His teachers were astonished, and it was wonderful to see what grace Patrick’s presence brought to our school.”

Beth realized she wanted the same experience for other Catholic families. She started a website to give parents “what I always wished I had when Patrick was entering school.” That led to a non-profit, The National Catholic Board on Full Inclusion, which promotes and supports Catholic schools who include students of all abilities.

“An inclusive education finds a place for all and does not select in an elitist way the beneficiaries of its efforts.” -Pope Francis

The National Catholic Board on Full Inclusion has two goals in mind: to advocate for families and support teachers to ensure more inclusive practices in Catholic schools. There were always a few diocese that were inclusive, but there was no national network to connect them. So far, Beth has verified 125 Catholic schools as practicing inclusion nationwide.

The non-profit provides free mentors to Catholic school teachers to help them implement inclusion in their classroom. Beth also helps families with research-based practices, giving them the strength to ask their diocese or school to practice inclusion.

Read a Related Post Here: Federal Vouchers Are No Choice for Students with Down Syndrome

Beth says her organization takes a non-judgemental approach to inclusion. “If a school says no, we have the power of ‘yet.” With proper research and supports we can move the school to a supportive, more inclusive place. We never shame a school.” And she notes that inclusion is different for every student and every school.

“Inclusive education means every person in the school is sacred and wholely, nobody is broken, and everyone has a purpose.”

With over 7,000 Catholic schools in America today, Beth says there’s much more work to be done. While many Catholic schools have remained silent, Beth’s organization has been vocal about the track record of vouchers in parochial schools. “Just look at Florida. The state has a voucher program for students with disabilities, but there’s only 2 diocese in the entire state that practices inclusion.” Still, Beth says the price of tuition is a big issue, and that’s why the National Catholic Board of Full Inclusion raises money to support families.

Even in their own family, the path to inclusion for Patrick isn’t easy. After being included kindergarten through 8th grade, the local Jesuit high school said they couldn’t support Patrick.

“Catholic schools’ biggest barrier to inclusion is mindset, not money. They believe an elite college-prep high school and inclusion are mutually exclusive. That’s just not the case. Look at Vanderbilt’s inclusion program. We’ll get there one day with the power of ‘yet’.”

Find out which Catholic schools in your state practice inclusion, or how you can bring inclusion to your neighborhood school here.

January 25, 2018January 25, 2018

Making SMARTER IEP Goals with an Inclusive Mindset

How do we get our loved ones with Down syndrome included in regular education classrooms with proper supports? For most, it’s an elusive question. But it all really starts with IEP Goals.

A good evaluation drives good IEP goals, which can drive placement in regular education with proper supports. The Individuals with Disabilities Education Act (IDEA) actually mandates specific requirements for IEP goals, but often even school personnel don’t know about these requirements. It may be up to you to advocate for more evidence-based, inclusive-driven IEP goals for your child.

Read Related Post Here: 3 Words that Will Transform Your Child’s Next IEP Meeting

Two Speech and Language Pathologists are using their combined 40 years experience at the IEP table to help parents and teachers write better IEP Goals. You may have heard of SMART Goals, which is an acronym created by a group of entrepreneurs and used in many industries. Although the acronym is helpful to the IEP goal writing process, Lara Wakefield and Kelly Ott say it needed to be expanded to include IDEA mandates. Keep reading to find out how they improved one of my son’s IEP goals using the expanded acronym: SMARTER.

“If we write SMARTER IEP Goals we have better outcomes. The entire IEP process and the student’s education depends on solidly written IEP goals. This includes driving placement to a more inclusive setting,” explains Lara Wakefield.

Overview of the SMARTER acronym:

Specific Skill sets and observable behaviors; Use specific actions words and contexts
Measurable with meaningful and manageable data collection, including baselines
Attainable with an annual IEP cycle
Research/evidence-based methods are documented in the goal
Teachable with cues and strategies that are explained in the goal
Evaluate the data and communicate it regularly to parents
Relevant to the general education curriculum by citing State Standards or Common Core Standards

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Read Related Post Here: 7 Research Studies You Can Use at Your Child’s Next IEP Meeting to Win the Fight for Inclusion

Lara says every part of the SMARTER acronym and the federal mandates for IEP goals back up inclusion. “If the goal is supposed to be relevant to the general education curriculum, than what better place to carry out specific skill sets than in the general education classroom. Make sure that’s in your child’s IEP goal,” says Lara. Click on the link above and you will learn that every research study since IDEA was written in the 1970s, shows a regular education setting is more beneficial than a segregated setting; even for students with the most significant disabilities.

Be careful! IEP teams who leave out the evaluation and communication of data could actually lead to a more segregated setting. “If the team has goals that don’t include meaningful and manageable data collection that they evaluate and then communicate to you, they could come back and say your child hasn’t made progress. Often they will recommend a more segregated setting to help your child make progress without proving it with meaningful data. Parents should question this approach and ask ‘where’s the data?’,” Lara explains.

I gave Lara a copy of one of my son’s IEP goals that had fallen into contention. I argued to the IEP team that the goal had still not been addressed six months after the IEP was written. When I called for an IEP meeting to review data for the goal it was apparent the goal had indeed not been addressed. I argued for more time in the classroom with a collaborative effort between the SLP and teacher, and got it. Lara said the goal left out how and when data would be collected and analyzed.

You can find Lara Wakefield and Kelly Ott’s step-by-step book to SMARTER IEP goals below. Visit their website here. Does your child’s IEP goals include how and when data will be collected? Is this data communicated to you? Comment below.

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