Category: Adult Self-Advocates

Posted on

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

Ricky Price (center) 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.

 

Posted on

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.

Posted on

5 Tips for a Better Transition Plan for Life After High School

Students with Down syndrome face many barriers to success after school. Too many fall off “the cliff” when they leave high school, with no village to catch them. With courts continuing to hold a low bar for school districts implementing transition services, it’s no wonder that unemployment for people with intellectual disabilities (ID) sits at 80%. Still, there are steps you can take to ensure your loved one gets the services and supports he needs to be successful in the real world.

Transition services start when your child turns 16-years-old. The IEP transition goals must be updated annually and include measurable goals. The Individuals with Disabilities Education Act (IDEA) defines these services as an outcome-oriented process that “promotes movement from school to post-school activities” like college, vocational training, integrated employment, independent living, and community participation. IDEA says transition services must be based on each student’s needs, and consider their preferences and interests.

Read Related Post: What College Should Look Like for Students with Down Syndrome

The problem is most of the case law surrounding transition services have created low expectations. I recently learned about this case law during a Council of Parent Attorneys and Advocates webinar on transition services. Overall, Circuit Courts have established three barriers to IEP transition services for student with disabilities:

  1. Courts have ruled the IEP transition process is procedural vs. substantive. This means if a parent brings a transition violation to court, most have ruled that it was just a procedural mistake and not a denial of a free and appropriate education (FAPE). There are few consequences for the violating school (Klein Independent School District v. Hovem, 5th Circuit 2012).
  2. Judges historically have looked at the IEP as a whole, instead of transition services specifically. If the judge believes the IEP overall has provided some benefit, then there’s no violation of FAPE if the transition services were not fully met (Lessard v. Wilton Lyndeborough Coop. Sch. Dist. 1st Circuit 2008).
  3. Courts have also diminished the value of transition service requirements, especially for students interested in college. Some cases have even inadvertently punished parents who advocate for college, by ruling that other services like vocational options and practical living skills don’t then have to be fulfilled in the transition plan (Coleman v. Pottstown Sch. Dist. ED.Pa 2013) (Sinan L. v. School District of Philadelphia, 3rd Cir. 2008).

Sometimes we have to evaluate how bad things are to understand how to make them better. Even though the case law surrounding transition is grim, there’s still a lot we can do to help prepare our loved ones for life after high school.

Tips for a Better Transition Plan for Students with Disabilities:

  1. Get a thorough transition assessment: The only place where case law seems bright is in the area of assessments. When courts looked at cases where there was either no transition assessment or a poor one, parents prevailed (Carrie I. ex re. Greg I. v. Dep’t of Educ, Hawaii 2012) (Gibson v. Forest Hills Sch. Dist. Bd. of Educ. 2013) (Dracut Sch. Comm. v. Bureau of Special Educ. 2010). Push your school district to complete a thorough transition assessment. It’s the only way to come up with meaningful, measurable IEP transition goals.
  2. Use the general education curriculum as a guide: IDEA requires, from its very first paragraph, that students with disabilities access general education curriculum. The Common Core has a lot of standards that are important to all students post-high school. The Free and Appropriate Education (FAPE) clause also requires an education that relates to state learning standards. Almost all states require standards that include career and college preparation (i.e. personal finance, time management, developing and action plan, diet and nutrition, home safety, etc). Look at these standards for all students in your state, and request that your student with ID also work on these important goals.
  3. Use Section 504: This civil rights law allows all students with disabilities to access the same activities as typical students. School clubs and after-school activities all provide direct experience for future careers, social interaction, self-advocacy, and leadership. Students with disabilities are often not selected for these clubs and extracurricular activities. You should work with your child’s IEP team to get them accommodations and modifications to participate in these clubs. It’s their right to participate, and it will provide an invaluable experience.
  4. Use the Every Student Succeeds Act (ESSA): According to this new federal education law, students with disabilities can still work towards a regular diploma, even if they are taking alternate assessments. Disability advocates worked tirelessly to get this provision in the law, because it’s so important to our loved ones’ futures. Let’s face it, most employers won’t even look at a candidate if they don’t have a high school diploma. It’s important that students with Down syndrome strive for a regular diploma, even if we’re unsure if they can obtain it. We never know unless they try, and it can help push expectations higher on transition goals.
  5. Use Endrew F. Supreme Court Case: It will be interesting to see new cases about transition violations moving forward in light of the Endrew F. Supreme Court Case. The justices in Endrew F. unanimously ruled that students with disabilities deserve a more meaningful benefit. It seems this new ruling could change how courts look at progress on transition goals. I also love Chief Justice Roberts quote during the hearing: “the IEP is not a form.” Parents can now ague that transition goals and services should be meaningful and progress should be checked often.

Click here and here for examples of good transition goals.  

Read Related Post: Realizing the Promise of the Endrew Supreme Court Case

Understanding the roadblocks at IEP transition meetings will help you prepare to break them down. Demand that your child’s IEP transition goals be concrete and have detailed data collection. There’s no way to know if goals and services are working without data collection and progress monitoring.

Research shows that students transitioning from school need IEP transition goals that look ahead. Experts say you should get rid of any goals a student has failed to accomplish in the last decade (i.e. identifying letters), and instead focus on specific goals that will help them adapt to the real world. Still, students don’t have to choose between academic and life skills. Push outside agencies to do life skills while still working on academics in school. After all you can’t understand how to navigate in the real world, unless you have experience out in it.

What does your child’s IEP Transition plan look like? What roadblocks have you faced to post-secondary success? Share your story below.

 

Posted on

College Students with Down Syndrome REACH for True Inclusion

College may not be for everyone, but for students with intellectual disabilities (ID) post-secondary programs have historically been completely out of reach. Since 2008 the federal government has given incentives to higher education programs who open their doors to students with Down syndrome and other intellectual disabilities.

Since the reauthorization of the Higher Education Act a decade ago, more than 260 college programs have been created for students with ID. But only the minority of these programs include a 4-year, all inclusive program for students with ID. The College of Charleston’s REACH program is one of them.

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

“I love it here. I am treated like a person, not like a disability. My classes are hard but I get all the help I need. I have lots of friends who don’t care about my disability, we don’t really talk about it,” explains a students with Down syndrome attending the REACH program.

The REACH program models a typical college experience. Students take regular classes and live on campus. The 4-year program started in 2009 with a grant from the College Transition Connection program, and has four areas of focus: academics, social, independent living, and career development.

Program Executive Director, Edie Cusack, says student success in the program often requires training parents and professors to change their mindset. “There’s an acceptance process for parents too. We’re really looking for them to let go. We often get parents at orientation who say ‘maybe that student can do it, but my child cannot.’ By the end of the program they’re proven wrong.”

“We also conduct specific inclusion training with professors, who often have no background in teaching techniques for students with intellectual disabilities. We promote UDL, scaffolding instruction, and stress high expectations that academic learning will take place,” explains Cusack.

Read Related Post: College Scholarships for Students with Down Syndrome

REACH boasts a 93% post-program employment rate, and a 75% independent living rate. Cusack says students spend the last six months of the program finding employment and independent living supports. Students must also complete an internship in a career field of their choice.

“I believe in the dignity of risk. Stopping people with disabilities from taking risks and making mistakes is stopping them from living a full life. A cool side effect of the program is the idea of disability is shifting. No one turns and looks and stares when our students with Down syndrome goes into cafeteria. In fact we have a student with Down syndrome currently who has been entered into the lottery to dorm with typical students because she’s on-par for living skills,” Cusack says.

There are no national standards or accreditation process that post-secondary programs must follow to serve students with ID. Think College works as a clearing house for more than 260 college programs, and is working with the federal government to develop standards. You can learn about other college programs here.

A bill was just released to the House of Representatives to reauthorize the 2008 Higher Education Act last week. Some worry that gains that have been made under the 2008 version, could be lost in the current bill that calls for deregulation. You can read the bill here.

You can find out about the College of Charleston’s REACH program here. Is your loved one with Down syndrome going to college? What other post-secondary programs have you learned about that serve students with ID? Share what you know below.

 

Posted on

A “Promise” for Independent Living and Employment

Will my son, Troy, always live with us? Will he have a fulfilling career? What will happen to my son when my husband and I pass away? These are questions every special needs parent must face.

A new trend includes places like “Promise of Brevard,” in my hometown. These type of communities include employment within the community, and supported living. Parents are often the brainchild of these communities. Supporters point to low employment rates for people with developmental disabilities, and how issues with transportation often hinder any employment. The idea is that everything is on-site. Opponents of this new trend argue that it leads to further segregation of people with disabilities.

Promise of Brevard is a 39 acre community especially for individuals with disabilities. It will have independent housing with support for over 120 residents with disabilities, as well as vocational training and employment at one of its 9 businesses on campus. 

Betsy Farmer breaking ground at Promise with her adult son, Luke.

The community is the realization of a promise Betsy Farmer made to her son, Luke, when he graduated from high school. Luke wanted to live independently and work like his typical brother, Josh.

“Promise is a place where young adults with special needs can live a life full of opportunities and freedom never thought possible,” founder Betsy Farmer explains.

Promise Thrift Shop

Over 270 individuals applied to live on Promise, but so far there’s only room for a little over 120.

Promise’s first business, a thrift shop, has been open for about a year and in its first month they had over 1500 customers. Six “Promisers” with disabilities are working at the Promise Thrift Shop.

The property will be more like a walkable community with a cafe and bakery, doggy daycare, Field of Dreams accessible sports complex, skate park, splash pad, festival area, bed and breakfast, accessible playground, and equestrian riding center.

Construction overlook of the residents area

More than 200 community supporters, and continuous fundraising events made the community possible.

Promise Cafe and Bakery will employ people with disabilities

All of Promise’s businesses will provide vocational training and employment for its residents with disabilities.

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

Ten college students from area universities will serve as housing assistants, so that residents get the support they need to live independently. There are also typical adults that rent apartments within the community. Opponents argue that this is not enough. That a truly inclusive community would have people without disabilities living beside those with disabilities.

Tell me about communities in your area below. How do you feel about this new trend? Do you feel like it’s new at all, or just another form of segregation for people with disabilities?

If you’re interested in learning more about Promise of Brevard, or would like to donate head here.