Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

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

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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.

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

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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.

 

College Students with Down Syndrome REACH for True Inclusion

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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.

 

A “Promise” for Independent Living and Employment

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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.

National Down Syndrome Congress Starts Nationwide Grassroots Advocacy Group

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Supporters of the Down syndrome community are by definition a fierce group. Parents and allies often will do anything to create a better path for their loved one with Down syndrome.

The need for grassroots advocacy training and guidance is even more important with current political threats to supports and systems (like healthcare, education, and employment) that people with Down syndrome rely on. Now, the National Down Syndrome Congress is giving you one more way to advocate.

NDSC Convention in Washington, D.C.

Today NDSC rolled out the National Down syndrome Advocacy Coalition or NDAC. The coalition will be a nation-wide, grassroots group of self-advocates and allies, working together to support policies that benefit the Down syndrome community. The program hopes to train volunteers to effectively engage with lawmakers and other change-makers to promote positive advances for our loved ones with Down syndrome.

Related: Advocates Urge Congress to Increase Funding for Down Syndrome Research

“NDAC will provide a formal mechanism to engage individuals – regardless of level of advocacy experience – in these efforts in order to maximize the power of our community’s voice,” explains NDSC executive director, David Tolleson.

There will be 3 levels of membership, and advocates at any level of experience (or no experience) can get involved:

  1. NDAC Members: Volunteer advocates of all abilities and levels of experience. There is no selection process to be a NDAC Member, but you will need to be a NDSC member first (if you attend the NDSC convention you’ve already paid the $50 annual membership fee). Find out what other benefits you receive with an NDSC membership and sign up here.
  2. NDAC State Leaders: Volunteer advocates with more experience, who will serve as the main grassroots organizers for their state. NDSC hopes to have two to three advance advocate organizers per state. NDSC will be rolling out this level of membership in the new year, and state leaders also must be NDSC members.
  3. NDAC Group Members: These are local, state, or national groups that can be Down syndrome specific, but also cross-disability groups that want to help with outreach and sharing information. The fee for group membership is $20, and entitles one group representative to be the point of contact for NDAC. The group fee is waived if the group is already an NDSC affiliate.
Chris Newlon and her 14-year-old daughter, Rebecca

Long-time advocate, Chris Newlon, who’s 14-year-old daughter, Rebecca, has Down syndrome says the more training opportunities to advocate the better. “Advocating isn’t specific to one organization or group. Nor is it only for politicians or educators. The more we advocate the better, from helping little kids on the playground figure out how to approach a non-verbal child to speaking with our congressmen. Our goals, our focus, is to make the lives of those with disabilities not seem so ‘alien’ but just part of life itself,” Newlon says.

Related: How to End Organ Transplantation Discrimination for People with Down Syndrome in Your State

NDSC Policy & Advocacy Director, Heather Sachs, will be heading up NDAC and says she’s excited to encourage advocates of all levels to find their voice:

“NDSC has been involved in advocacy for decades, but we have really established ourselves as the leading voice on issues such as education, Medicaid, health care, transition and employment policy over the past year. We did a massive amount of outreach and grassroots organizing during the health care and Medicaid battles over the summer, and those efforts laid the groundwork for NDAC. There is a clear need and desire for more grassroots advocacy training and opportunities in our community,” explains Sachs.

Want to apply to be a NDAC member? Click here.

Are you a NDSC affiliate or cross-disability group and want to join arms with NDSC? Email lauren@ndsccenter.org

NDAC State leaders can start applying in January of 2018. 

“We encourage everyone to become a member of NDAC and ask your family and friends to join as well. Given the constant threats to Medicaid, health care, education and employment, the NDSC policy team needs help from a large grassroots army to advocate for equal rights and opportunities for people with Down syndrome. Join us!” Sachs says.

For more information on the National Down syndrome Advocacy Coalition click here.

Tell me about your experience as an advocate, or what experience and training you would like to gain in your advocacy journey below.