Category: Advocacy

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How School Boards are Using Endrew F. Supreme Court Case Against Students with Down Syndrome

A recent U.S. Supreme Court case that was meant to be a watershed moment for the Down syndrome community and all students with disabilities, has quickly turned into yet another way to try and segregate our children.

The Endrew F. can be compared to the Brown v. Board of Education ruling for African American students. In Endrew F., The Supreme Court unanimously ruled schools must be held to a “markedly more demanding” standard when educating students with disabilities. But school boards are using the high court case to make an argument for continued segregation of students with the most significant disabilities.

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

It’s been 10 months since the Supreme Court created a new standard that requires special education students to meet academic standards and advance grade to grade. In that short time two cases revolving around the segregation of students with Down syndrome have put in question the promise of Endrew F.

As these two cases advance to the Ninth and Sixth Circuit Court of Appeals, the question will be: How will the courts interpret Endrew F. for students with intellectual disabilities? Can these students only receive “more meaningful benefit” in a self-contained class?

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

If you’ve read this blog before, or have any knowledge of inclusion for students with Down syndrome, you know there’s NO research that shows more academic benefit for students with the most significant disabilities in self-contained classrooms.  In fact, every research study done since the Individuals with Disabilities Education Act first became law in 1975, shows the regular classroom with proper supports provides all students with the best outcomes.

In both of the current cases at the federal appellate court level, R.M. v. Gilbert Unified School District and L.H. v. Hamilton County Department of Education, the parents and their supporters (COPAA, NDSC, NDSS, and other disability rights organizations) argue the boys with Down syndrome are in fact making progress in the regular classroom. You can read more about the cases below.

Read Related Post Here: L.H. v. Hamilton County Department of Education and R.M. v. Gilbert Unified School District

But the National School Boards Associations filed an amicus brief against the boys, and in favor of the school districts that want to segregate them. The organization that supports more than 90,000 school board members argues “academic benefit is the key factor for a court determining whether a school district has provided services in the Least Restrictive Environment (LRE).” The organization believes Endrew F. strengthened the importance of the educational benefit factor in LRE determinations. They stressed that school personnel are the experts when deciding if progress has been made and if placement should change, and courts shouldn’t “second guess” this judgement.

Read the National School Boards Association amicus brief for the R.M. Gilbert Unified School District here and for the L.H. v. Hamilton County Department of Education case here. 

Special Education Attorney and Professor, Susan Marks, is troubled by the National School Boards Association interpretation of the ruling. “They are essentially using Endrew F. as justification for trumping the LRE if a school team believes that a student would have greater academic progress in a separate program. Another troubling issue with the National School Board’s reasoning is their assertion that courts should give deference to the school professionals in making such determinations. However, we know that the IDEA gives parents a substantial role in developing their child’s program,” Susan Marks explains.

Special Education Advocates and Attorneys agree if the courts accept this troubling interpretation of Endrew F., parents will find it increasingly more difficult to access an inclusive placement. Still, many are confident the boys with Down syndrome in this case will prevail, because of the evidence that they made meaningful progress in regular education.

What do you think about these cases? Who do you think will prevail and why? Why are we still fighting for inclusion of students with the most significant disabilities? Tell me what you think below.

 

 

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How a Tennessee Boy with Down Syndrome’s Family Fought School Segregation and Won

Deborah Duncan Rausch says it took countless sleepless nights researching and even selling her home to fight her son, Luka’s, public school district and win. She doesn’t want any other family to have to do the same just to get their child included.

Deborah with her son, Luka

Deborah says it started in their hometown of Knoxville, Tennessee when she realized starting in preschool Luka would be segregated from his peers and set on a non-academic path to nowhere. The family moved to Hamilton County to a magnet school in Chattanooga that initially accepted Luka with open arms. But starting in 3rd grade, as high stakes state testing began, the school started pushing for a segregated setting even though Luka was making progress.

The district wanted to place Luka for half his day in a self-contained classroom in a school outside of his neighborhood. “The segregated class follows no state curriculum or standards. There’s no homework or grades. No accountability,” Deborah explains.

Read Related Post Here: Ninth Circuit Court to Decide if Student with Down Syndrome Can Stay in General Education Classroom

Deborah pushed back and started advocating for other families facing the same prejudice in her school district. “It was so important to me because I knew it was endemic. They were trying to segregate my son as a 9-year-old. It was worth selling my house to pay the $75,000 in legal fees to force the school district to follow federal law. But what about the families that can’t?” Deborah asks.

Knowing Luka would not receive a Free and Appropriate Education in the Least Restrictive Environment if he stayed, Deborah moved her son to a Montessori School where he continues to attend today. After a five year battle with the school district, the family eventually prevailed at the district court level in Tennessee. The District Court ruled that a self-contained class is more restrictive than necessary, but that the family would not receive reimbursement for the private Montessori School.

She didn’t stop there. “I’m in finance, so I know you have to follow the money,” says Deborah. She started digging deep, making numerous Freedom of Information requests, and soon uncovered an incentived funding formula that keeps students with disabilities in her county in a cycle of segregation. “Our district’s formula pays more in segregated setting receiving the exact same level of service, than if they were in regular setting. We filed suit against Tennessee’s Department of Education for violating their fudiciary duties. They quickly settled with us, because they knew we were right,” Deborah explains.

“We can’t go any place in our town without parents coming up to us and thanking us for what we did. They say they felt helpless,” Deborah describes.

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

The family’s battle for inclusion is still not over. Hamilton County Schools actually filed an appeal to the Sixth Circuit Court of Federal Appeals. “They have no ground to land on, but it allows them to delay reimbursement of our legal fees. They just look vindictive and have spent a lot of taxpayer money just to violate the law. We finally decided to cross appeal for reimbursement of the Montessori school private tuition,” Deborah explains.

12-year-old Luka

The Supreme Court of the United States ruled that families can be reimbursed for private school tuition if the public school IEP was found to be inappropriate, and the if the private school placement is deemed to be the most appropriate available option (School Committee of the Town of Burlington v.Department of Education of Massachusetts). “The District Judge even stated Luka made progress at the Montessori School, and he ruled the public school was inappropriate. I think he knew there was a clear violation, but just didn’t want to penalize the school district by making them pay for the private school tuition,” Deborah explains.

Even after all of the family’s success, Deborah would never recommend suing. “I would recommend learning everything you can about your child’s rights. Get connected to a local advocacy agency. No parents should go into an IEP meeting alone. Always have an advocate with you. Schools will negotiate if pushed. Fewer district will go as far to segregate as ours did,” Deborah says.

“And If you don’t care at all about disabilities, care about the the cost of taking parents to court. We could be pushing a million dollars for my son’s case, and not a single student has been educated with that money. That money should have been spent on training teachers, co-teachers, advocacy training for parents. Everyone should be outraged by that.”

A ruling by the Sixth Circuit Court for L.H. v. Department of Education of Hamilton County could take months or even a year. I will keep you posted on any updates about the case.

Have you or someone you know had to fight a similar battle for inclusion? Are you frustrated that we’re still fighting this fight more than 30 years after the Individuals with Disabilities Education Act (IDEA) was passed? Tell me about it below.

 

 

 

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Parents and Non-Profit Advocate for New Medical Guidelines for Adults with Down Syndrome

“I was getting phone call after phone call from heartbroken parents about their once successful adult child with Down syndrome suddenly shutting down; having major health or mental problems. They have no where to turn. Most doctors don’t have the basic knowledge to treat adults with Down syndrome.”

Amy Van Bergen with her son, Wils

Amy Van Bergen says it was these regular phone calls she received serving as Executive Director of the Down Syndrome Association of Central Florida for the past 15 years that convinced her to start advocating for new medical guidelines for adults with Down syndrome.

The updated medical guidelines are long overdue. Although life expectancy has more than doubled for people with Down syndrome in the past 30 years, the new longevity often comes with a host of health problems. It is estimated 70% of people with Down syndrome will develop Alzheimer’s. They’re also at higher risk for many immune disorders and obesity. At the same time, they’re at lower risk for experiencing solid tumor cancers, heart attacks, and strokes. Because of this difference in pathology, adults with Down syndrome deserve unique medical care.

Read Related Post Here: Our Family LENDs Unique Perspective to Medical Professionals

Global Down Syndrome Foundation convinced Amy to use her contacts with other Down syndrome affiliates throughout the country to raise awareness and money for the development of new medical guidelines. The nonprofit spearheaded the initiative at the beginning of 2017, and hopes to have the guidelines approved by the end of 2018.

Global Down Syndrome Foundation is still raising money to finish the adult medical guidelines. Click here to donate!

The American Academy of Pediatrics already has medical guidelines for children and teens with Down syndrome. I bring these guidelines with me every time I take my 5-year-old to his annual well-check. Global says often young adults with Down syndrome “fall off a cliff” when they leave their pediatrician for a new doctor with no medical guidelines.

“We believe this important project will be a “first-in-kind” because (1) Global has enlisted a national medical guidelines organization to ensure there is an extensive literature review process and that any recommendation or guideline is evidence-based, (2) we are fortunate to have several leading U.S. medical practitioners expert in the care of adults with Down syndrome who have agreed to author the guidelines, (3) Global is committed to raising the funds needed in order to update the guidelines every five years so as to build upon new clinical research findings and improve the guidelines with each iteration,” explains Global’s Director of Adult Initiatives and Special Projects, Bryn Gelaro.

Modeled after the guidelines for children and teens, the new adult medical guidelines will include an easy-to-use list of medical assessments and tests adults with Down syndrome should take over the lifespan. “Short term we hope the guidelines improve the care adults receive by reducing the incidence of misdiagnosis, alerting doctors to the specific health needs of this population, and empowering adults and their families to seek proper care.  Long term we hope the guidelines build upon themselves, both in the breadth of the content areas covered and in the number of Down syndrome experts that collaborate as authors. We also hope that the guidelines, overtime, will highlight the holes in scientific literature related to Down syndrome so that researchers can address those gaps,” Bryn says.

Read Related Post Here: How to End Organ Transplantation Discrimination in Your State

In the end, it will be up to self-advocates, parents, adult siblings, and other caregivers to understand these new guidelines, and make sure their doctors’ do too. Many already understand the stakes are high. “I haven’t had to sell anyone on this project. They understand the importance,” Amy Van Bergen explains. “We’ve already raised more than $100,000 in the Down syndrome community. Our goal was $170,000. And Global will match what we raise.”

Amy will be at Down Syndrome Affiliates in Action Annual Leadership Conference this February. She hopes to meet her goal soon, so Global can finish their important work.

Donate to Global Down Syndrome Foundation’s Initiative Here! 

Do you have an adult child with Down syndrome? How will these medical guidelines impact your loved one? Comment below!

 

 

 

 

 

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Why I Want My Son With Down Syndrome to Live a Life of Interdependence, Not Independence

Recently I wrote a blog post lamenting my mortality as it relates to my son with Down syndrome. Parents are often a child with a disability’s first and most important advocate. While the post started off with me whining that no one can replace me, it ended on a more realistic, less narcissistic note. I will probably die before my son, and he will be just fine without me. How, you ask?

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

He will do just fine, because he will have a “Circle of Support” that will allow him to lead a successful life of interdependence. You read that right: not independence, “interdependence.”

This idea is not mine. Many parents of children with disabilities facilitate this idea of interdependence every day, and one in particular has coined the phrase “Circle of Support.”

National recognized speaker, author and advocate, Janice Fialka, shared her son’s journey to interdependence with me via phone the other day. You may recognize her 30-year-old son, Micah, from the upcoming documentary “Intelligent Lives.”

Micah lives exactly 471 miles from home (I had to smile over the phone, because of course his mom knew the exact mileage), and has worked for the University of Syracuse as a teacher’s assistant for the past 5 1/2 years. He also has an IQ well below what most people would consider functional for a life of independence and “success.” Micah’s mom, Janice, says Micah’s success is 30 years in the making and includes help from dozens of friends.

“My advice to families is to seek out support. At first I felt awkward, uncomfortable, angry or too shy to ask for help. I soon realized Micah needs more than just me,” says Janice.

Micah (center) with his most inner circle–his family.

Fialka says families need to drop their love affair with independence. We all need a circle of support to be successful. “It’s important to learn the value of interdependence. Learn to ask for help and let people in. We had to be intentional about this with Micah,” explains Janice. Micah’s family became intentional about interdependence in elementary school by creating a “circle of friends.” First they invited friends in his class to hang out with Micah at lunch time, recess, and at home.

“Micah is poised now, but he could be very annoying when he was younger. He just didn’t know how to interact with people. I can remember crying because we invited friends over and Micah would be standing in the corner not playing with his guests,” Janice describes. The “Circle of Friends” got more complicated in middle school, but Janice was able to build relationships with eight families who continued to interact with Micah. By the end of high school, Micah had a group of friends rally, petition, and eventually help Micah sue a local university to allow him to live on campus and attend college courses there.

Read Related Post: Social Media Give Self-Advocates Voice

“When you ask Micah now, he will tell you he’s always had lots of friends. But he spent countless weekends at home alone. He’d call five friends and no one could meet up,” remembers Janice. Still, the family continue with the intentional interaction, and it really paid off. “When Micah was offered a job seven hours from home, he was the one that came to us an said ‘I’m going to need to create a circle in Syracuse if I’m going to live on my own.’ We knew then what an impact the idea had on Micah’s life,” Janice says.

Janice wants parents to know it’s “not about letting go, but holding on differently.”

What an impactful message from a mom who’s been there and gets it. You can order Janice and Micah’s new book, “What Matters: Reflections on Disability, Community, and Love,” here. Listen to an interview Janice gave to NPR here.

Tell me what you think about the idea of a “Circle of Support” for your loved one with Down syndrome below. How have you already begun this journey? What challenges and successes have you found in helping your loved one seek a successful life of interdependence?

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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.