Inclusion Evolution

Empowering Individuals with Down Syndrome at School and Work

Endrew F. In Action

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It’s been almost a year since the U.S. Supreme Court (SCOTUS) ruled schools must be held to a “markedly more demanding” standard when educating students with disabilities. The case of Endrew F. (Drew) vs. Douglas County is the disability community’s Brown vs. Board of Education. It should have a far reaching impact on America’s 6.5 million students with disabilities.

With IEP season in full swing, the question is: are parents using this case to advocate for higher expectations for their child with a disability?  

With most students’ annual IEP meetings coming up this spring, there are some easy ways to incorporate this important SCOTUS decision into your child’s IEP meeting to ensure they’re getting a meaningful education. Below are some quotes you can use at the IEP table, to get what your child needs.

There is worry from some disability advocates that Endrew F. will be used against students with the most significant disabilities, especially when it comes to the “least restrictive environment clause” of IDEA. In fact, two court cases are advancing to the Ninth and Sixth Circuit Court of Appeals about this very topic. The questions in these cases: 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 how the school boards are using Endrew F. against the students in these cases in the related post link below.

Read Related Post: How School Boards are Using Endrew F. Against Students with Down Syndrome

Right now, you can prevent your child’s district from using Endrew F. to segregate your child by using the SCOTUS language in favor of protecting parent IDEA rights. Two quotes in particular could help:

  • This new standard requires a “prospective judgment by school officials” that “will be informed not only by the expertise of school officials, but also by the input of the child’s parents and guardians”
  • School authorities should offer a “cogent and responsive explanation” for their decisions

Use 3 magic words to get a “cogent and responsive explanation” for school’s decisions you don’t agree with: Prior Written Notice. Schools are required by federal law to give you Prior Written Notice to explain any decision they make. SCOTUS says this explanation needs to be “cogent” and “responsive,” and it’s important because it creates a paper trail if problems persist.  Read more below.

Read Related Post: 3 Words That Will Transform Your Next IEP Meeting

There are already some great resources out there to help you use Endrew F. at your child’s next IEP meeting. I especially love Understood’s easy to fill-in worksheet that relates Endrew F. to what your child’s IEP says. You can find it here.

How do you plan to use Endrew F. at your child’s next IEP meeting? Are you worried about your child’s district using Endrew F. against your child with a disability? Tell me what you think below. 

Speak Their Language

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Every career has it’s own jargon and technical language. Special education is no different. It’s easy to get lost in the maze of abbreviations: FAPE, LRE, IEE, ESY. The legalese can be intimidating: Continuum of Placement, Annual Yearly Progress, Prior Written Notice, Due Process. But understanding and using even a few of special education’s key terms can help you gain the respect and authority you need at the IEP table to affect positive change for your child.

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

Don’t worry about memorizing all the acronyms and technical definitions of the Individuals with Disabilities Education Act (IDEA). Unless you do this for a living, it can be next to  impossible to know off hand what everything means. Instead, don’t be afraid to ask questions. The best questions start with “why?” Or “Can you show me where it says that in your district or state policies?” Also, bringing an advocate who knows about state or federal law can help. Find one here.

Still, there are some must-know terms that could ensure your child gets the supports and services he needs.  When it comes to your child’s IEP keep these key terms in mind:

  1. FAPE– The entire basis of the Individuals with Disabilities Education Act (IDEA) centers around FAPE or a Free and Appropriate Education. Before IDEA was signed in 1975, children with disabilities either had no access to education or were put in a classroom with no supports or expectations that learning would occur. But the question since then has been: what is an “appropriate” education? Now you can use key terms from the recent Supreme Court Case, Endrew F., to advocate for a more “meaningful” and “ambitious” IEP. Click here for easy to understand talking points from Endrew F. to help you advocate for your child. Click here for a worksheet you can take with you to problem-solve issues in the IEP.
  2. LRE– Parents of children with Down syndrome are typically in support of full inclusion in general education with proper supports, but too many aren’t accessing the Least Restrictive Environment (LRE). A key term that may help your child’s school understand the seriousness of LRE is “Continuum of Placement.” IDEA specifically states that the continuum of placement for all students starts in general education with proper supports. A school can only move a child to a more restrictive environment after they have exhausted all supports and proven the child has made no meaningful progress. Too many schools start in a self-contained room, without even trying general education with proper supports. Next time you’re at the IEP table and school personnel push for a restrictive environment, remind them that the continuum of placement starts in general education with supports. Ask them if other supports or services can be added to make your child successful there first.
  3. SDI– Even before you make a decision about placement and LRE, you should ask about Specially Designed Instruction (SDI) and Related Services. SDI is adapting content, methodology, or the delivery of instruction as appropriate for the needs of your child. Related Services are supportive services required to assist a child with a disability to benefit from special education like teacher or parent training, counseling services, transportation, therapy or medical services. Always remember what SDI is NOT: it does not take the place of grade level curriculum and is not a type of placement. In fact, SDI should drive placement in the least restrictive environment. Click here for some ideas of SDI.
  4. PWN-One of the most powerful key terms to learn is “Prior Written Notice” or PWN. Don’t be fooled by the word “prior.” Instead, think of this as getting notice from the school at any point there is an agreement or disagreement. Ohio state actually has a PWN form that schools use, but many states and school district have no idea that they’re supposed to give parents notice in writing. When it comes to most legal documents, if decisions aren’t in writing they never happened. Often schools have no problem giving you notice about benign topics like meeting dates or evaluation timelines, but when it comes to disagreements notice is often missing. Make sure you ask your child’s IEP team to give you Prior Written Notice explaining a refuse of placement or service. This will create a paper trail if problems persist. On another note, you should also put your thoughts and decisions in writing, and ask that it’s officially added to your child’s IEP. If you really want extra speech time for your child, but never put it in writing and never ask the school to give you notice as to why they refuse more time, then it’s like the request and denial never happened. Read the related post below for more information on PWN.

Read Related Post: 3 Words That Will Transform Your Next IEP Meeting

Do you ever get tripped up by terminology used in an IEP meeting? What strategies do you use to stay an informed IEP team member? Tell me about it below.

 

My Love-Hate Relationship with the “I” in IEP

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Federal law and evidence-based research supports full inclusion with individualized support for students with Down syndrome. Still, a recent study by the federal government found that less than half of students labeled as Intellectually Disabled are included with their typical peers for most of their school day (read the report here).

Many blame the lack of federal funding to implement the Individuals with Disabilities Education Act (IDEA) for the failure to include our children properly. The feds promised they would fund 40% of the IDEA budget, but they’ve only ever funded up to 17%. Others place blame on a culture of segregation in schools. Still others blame some teachers, administrators, and even parents for not holding high expectations for our children. To some degree, it’s true that all of these factors are part of the problem.

But another surprising roadblock to full inclusion is the “I” in IEP.

The bedrock of the Individuals with Disabilities Education Act (IDEA) is the “Individualized” Education Plan (IEP). Your child’s IEP should be a roadmap to inclusion in the general education classroom with their typical peers. It’s a detailed plan that should be reasonably calculated to plan for your child’s potential growth, and ensure they have access to the general education curriculum with needed supports.

Read Related Post: 7 Essential Research Studies to Win the Fight for Inclusion

In most ways, the “I” in IEP is a good thing. All children learn differently, even those within the Down syndrome community. All our children deserve to be individually served and supported. The “I” in IEP can also be used against our children too. How many of you have heard school personnel tell us that our child with Down syndrome would receive a more “individualized” education in a segregated setting? Many parents either want this path for their child or don’t question the legitimacy of it.

Our schools are imperfect systems. Most do the best they can to serve our children, but many are using unproven programs for students with intellectual disabilities. They’re doing what’s always been done, even if the outcomes continue to be no high school diploma and little chance of meaningful employment. Click on the “7 Essential Research Studies to Win the Fight for Inclusion” above and you will find that all the research collected since IDEA passed in 1975, shows inclusion is the best path for students with even the most significant disabilities. Even though we must work in the broken system we have, doesn’t mean we should stop advocating for evidence-based improvements to education for students with Down syndrome.

Many parents have fought long and hard to pave the way for inclusion for our generation of children. But inclusion in general education with proper supports is still not a reality for too many students with Down syndrome. Often the reason is the “I” in IEP. It’s ironic that many parents want to use the “I” in IEP to get their child into general education with supports, while many schools are using it to segregate children. Which is the correct course? I believe we have to follow the law, which states that the continuum of placement begins in the general education classroom with proper supports. It’s understandable if after exhausting all individualized supports in the general classroom, a child may need more supports pulled out of the classroom. But we need to follow the law first and foremost.

Read Related Post: 4 Resources to Help Teachers Include Students with Down Syndrome in the General Education Classroom

I believe our children are not the problem. They have proven they can surpass society’s pathetically low expectations, and they want more. They deserve “individualized” education with their typical peers. We can’t continue to go along with a failed way of educating our children. The stakes are too high. People with Down syndrome are living much longer, healthier lives. Still, for most, their prospects after high school are grim.

How will children with Down syndrome ever be fully included when each school and parent’s definition of “individualized education” is different? If the “I” in IEP is used to divide and conquer us, we’ll never win the fight for inclusion. We must follow the law and research, and ensure that our child is receiving individualized supports in the least restrictive environment.

What do you think? What’s the biggest barrier to full inclusion with proper supports for students with Intellectual Disabilities? Comment below.

 

 

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.

Making SMARTER IEP Goals with an Inclusive Mindset

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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.