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.

 

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.

 

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.

Stop Giving Only Kids with Disabilities Janitorial Jobs at School

Imagine your black child is asked to clean up trash throughout his school with all the other black students in an effort to learn life skills. White students are busy learning math, reading, writing, and socializing in the halls. They watch the black students clean up after them.

This smacks of demeaning and stigmatizing discrimination. It’s unbelievable in 2017! Except for the fact that if you replace black student with disabled student it’s a very real scenario in many schools throughout America today.

Troy loves a good dance party when we clean up at home

So, I’m about to go on a rant. Like a knock out, throw down tirade. Because this is something I feel VERY, VERY passionately about. My son with Down syndrome will NOT; I repeat, WILL NOT be cleaning his school while his typical twin brother is learning to read, write, and do math.

Having children with disabilities cleaning while their typical peers are learning is the anti-thesis of inclusion. It’s the very definition of discrimination.

This problem is very real at my 4-year-old son’s own school and too many of my friends’ children’s schools too. A dear friend of mine’s daughter with Down syndrome attends the same school as Troy. Her daughter and other students with disabilities learn to vacuum and wipe the cafeteria tables in kindergarten. KINDERGARTEN, people!!! The students that need more help and time in academics are being singled out to instead learn how to vacuum at age six.

I flinched when my friend told me this. Troy is only two years behind her daughter. Our experience in preschool at the school has been good, but I cannot envision Hunter watching his brother cleaning his table at school. Asking me after school: “Why isn’t Troy in class with me anymore? Why is he cleaning tables at lunch, instead of eating with me?” It literally rips my heart out to think about it. What will I do?

Read Related Post Here: Class of 2031, Yes My Son with Down Syndrome Can Go to College

Here’s the thing: I’m all for life skills. I think EVERY student can learn a thing or two about life by cleaning their school. I am in full support of bringing home-economics and shop class back. In Japan there are no janitors, because the students clean their school EVERY DAY. This is admirable! In fact, I would be proud if any one of my children chooses a profession in the janitorial, waste management, fast food industry, etc. My mother and step-father had jobs in both. NO job is beneath ANY of my children, disability or not. Getting a job and keeping it is what makes me proud.

The fact of the matter is my son and students like him are being singled out, and pigeon-holed into a stereotypical path for employment and life. Were they even asked what interests them; what they want to be when they grow up? Their typical peers are watching this cleaning scene unfold on a daily basis and here’s where their minds begin to be molded: disability is different, disability is separate, disability is dirty, disability is shameful.

Read Related Post Here: Why You Should Hire Someone with Down Syndrome

This mindset follows them throughout their educational career and into adulthood. Educators who support these programs argue they’re teaching these special students activities that “instill soft skills such as how to follow rules, adhere to a schedule, complete tasks and accept criticism.”

As students with disabilities enter high school it gets worse. Many are shuffled into a life skills path that supposedly prepares them for employment in the real world. Wanna know how that’s going? Only 24% of individuals with intellectual disabilities are competitively employed. News flash: the life skills path isn’t working!

Parents and Teachers Need to Demand Equitable Treatment of Students with Disabilities. 

Christopher on his way to school

One Oklahoma mom is doing just that after her son with Down syndrome reacted with anger at being given a job of cleaning up after teachers and students at his school. Jordan Shuffield says her son, Christopher, “isn’t as verbal as some of the kids in his class but he does have feelings about it.”

Christopher lashed out in frustration on at least one occasion: “He had cleaned a table and a group of teachers sat at the table he cleaned. In his frustration he threw his bucket on the ground, and then had to mop up his mess,” Shuffield describes.

Now Shuffield has a meeting scheduled with the school this Friday to advocate for change. “We feel that having his class do this work at school isn’t inclusive,” Shuffield explains. “My son has lost skills, such as money denomination and simple addition and subtraction skills that he used to know.” The family believes if more time was spent on academics than cleaning, Christopher would be making better progress.

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

Federal law and a recent U.S. Supreme Court ruling demands that Christopher and other students with disabilities make “meaningful progress.” Shuffield has every right to demand a change in how her son is being educated. We’ll check back in on their story as it unfolds.

Has your child or loved one experienced this type of discrimination in school? Comment with your stories below. 

 

 

 

 

Time to Call, Tweet, and Email Your Senator…AGAIN!

It’s baaaccckkkk! A new bill to repeal the American Care Act, and in turn cut Medicaid. 

Remember the endless summer? When we all tirelessly advocated to kill the bill, and it worked. A new, worst bill is gaining traction in the Senate. Look at the graphic below to see what it would do:

It seems Republican Senators are hell-bent on keeping their campaign promise, but in doing so they’re also threatening to restructure and CUT Medicaid.

Why should you care about this bill? Because it will have a negative impact on people with disabilities. People with Down syndrome often use Medicaid throughout their life, even if their parent doesn’t meet the financial threshold for consideration. That’s because most school districts use Medicaid dollars for speech, OT, PT, bus and other services. Medicaid dollars are used in transitional services when our loved ones become adults. That means they can qualify for a job coach, transportation, and housing supports all because of Medicaid.

See Related Post Here: Why Medicaid Cuts Would Devastate the Down Syndrome Community

Here’s how this specific bill will impact the disability community:

  • Puts per capita caps on Medicaid, leading to devastating cuts in funding
  • Eliminates the Medicaid expansion and marketplace subsidies and replaces with an inadequate block grant
  • Allows states to waive protections for people with pre-existing conditions
  • Allows states to waive the requirement to provide essential health benefits (like mental health and substance use services, rehabilitative and habilitative services, and maternity care)
  • Penalizes states that have invested in their Medicaid system

You can read the actual bill here.

See Related Post Here: We Meet With Ohio Senator Portman’s Office in Last Ditch Effort to Save Medicaid

We’ve been here before, you know the drill! Your marching orders are as follows:

CALL (202) 224-3121 

EMAIL addresses

TWEET handles

Your U.S. Senator and tell them how important Medicaid is to you and your family. Ask them to oppose the Graham-Cassidy bill or any other bill that would cut or cap Medicaid. Use the follow hashtags: #SaveMedicaid #NoCutsNoCaps

We killed the bill once. We can do it again! But it’s going to take a village!