Category: Education

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Speak Their Language

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.

 

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

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.

 

 

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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.

 

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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.