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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. 

 

 

 

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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:

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

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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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!