Planning for the Future: The Importance of Transition Services

My children just started high school. It has been an eye opening experience for all of us. Remember when you were in high school and your long term goals consisted of graduating and having a date for prom? Well, let me tell you, times have certainly changed.

In the recent push to make high schoolers more "college ready," many middle schools have begun requiring 8th grade students to plan out their entire high school curriculum. More and more high schools are instituting academies within the school, each with courses designed to prepare students for different career paths from the STEM program (Science, Technology, Engineering and Mathematics) to visual and performing arts. Students are expected to choose an academy by the end of their freshman year.

Children with disabilities and their families must similarly make a plan for the future. Will that future include college? Vocational training? Finding employment? What about living arrangements? Will your child be able to live independently or will s/he need assistance? What about transportation needs? Personal finance? To help give you a better idea of things you should be thinking about, check out this example of a Parent Transition Survey.

One of the primary goals of the IDEA is to enable students with disabilities "to lead productive and independent adult lives, to the maximum extent possible" (20 U.S.C. 1400((c)(5)(A)(ii)).  To that end, transition goals and services are a crucial part of any Individualized Education Program as they prepare students for life after high school. The legal definition of "transition services" found in the Code of Federal Regulations Section 300.43 states:

(a) Transition services means a coordinated set of activities for a child with a disability that(1) Is designed to be within a results-oriented process, that is focused on improving the academic and functional achievement of the child with a disability to facilitate the child's movement from school to post-school activities, including 

• postsecondary education, 
• vocational education, 
• integrated employment (including supported employment), 
• continuing and adult education, 
• adult services, 
• independent living, or 
• community participation; 

(2) Is based on the individual child's needs, taking into account the child's strengths, preferences, and interests; and includes—(i) Instruction;(ii) Related services;(iii) Community experiences;(iv) The development of employment and other post-school adult living objectives; and(v) If appropriate, acquisition of daily living skills and provision of a functional vocational evaluation. (34 C.F.R. 300.43).

So, paragraph (a)!) lists the general goals to be considered and paragraph (a)(2) lists the general types of services to be provided. Beginning no later than age 14, the IEP must include more specific transitional goals set by and on behalf of the student as well as the services necessary to assist the student in achieving those goals. The student must be included to the fullest extent possible in any IEP team discussions relating to postsecondary transition.  The IDEA requires these transition goals and services to be already in effect when the child reaches the age of 16 and updated annually thereafter (20 U.S.C. 1414(d)(1)(A)(i)(VIII).

If you're unsure what postsecondary goals are appropriate for your child, transition assessments are a great place to start. They can be formal or informal and cover four main areas:

1. Educational Assessments focus on academic and cognitive abilities and can also aid in identifying specific learning disabilities. 
2. Vocational Assessments identify career interests and job skills including occupation-specific skill certifications. 
3. Psychological Assessments target behavioral, emotional and social skills. 
4. Medical Assessments deal with physical and functional abilities such as vision and hearing.

You can find more in depth information and examples of the different types of transition assessments here.

Depending on the goals set, additional school personnel and/or representatives from outside service agencies who will charged with paying for or providing transition services must be invited to attend future IEP meetings (20 U.S.C. 1412(a)(12)). For example, if the goal is postsecondary education, the school's college admissions counselor should attend. If the goal is to live independently then an extension services agent should be invited. For a list of other possible service providers to be included, click here.

There is a lot to think about in transition planning and it can be scary for parents as well as children; but there is plenty of information and assistance out there. I have included links to some particularly helpful sites below. You can also talk to your school guidance counselor, your child's doctor or an advocate. The more prepared your child is when they leave high school, the better his/her chances of making a successful transition to adulthood.

Transition Resources

National Dissemination Center for Children with Disabilities Transition to Adulthood
Association on Higher Education and Disability http://www.ahead.org/
The Council for Exceptional Children Division on Career Development and Transition

Wake Up Call!

A news item in the Huffington Post was brought to my attention a few days ago that just breaks my heart. A mother in Michigan was arrested recently for attempting to kill herself and her 14 year old daughter Isabelle who is autistic. The article talks briefly about the family's most recent struggles with an aggressive, sometimes violent, child, a promising but prohibitively expensive treatment program, and battles with insurance companies and school personnel painting a picture of a defeated and desperate woman. In her blog, "The Status Woe", Kelli Stapleton wrote about her daughter. Her posts chronicle many of the ups and downs, the small victories and disheartening setbacks that seem to go hand in hand with raising a special needs child. In her stories there is hope and despair, joy and sorrow, pride and guilt. It is clear, at least to me, she loves Isabelle. While I will never understand or condone her actions in trying to kill her own child, I would be lying if I said I couldn't identify with the emotional roller coaster depicted in her blog entries.

Being a parent is not easy. Being a parent of a child or children with special needs is hard. For those of you with typically developing children, let me try to explain a little what I mean. Think back to when you had infants and toddlers, maybe you still do. They demand your focus and attention every waking moment they are with you. You are constantly running after them, making sure they are fed, cleaned, clothed, healthy, safe, engaged, socialized and overall, happy. As kids get older, things change. As parents, you take a step back as they take on more and more of those responsibilities themselves. You still need to supervise of course but it is done from more of a distance the older they get until they are grown and on their own.

But what if things didn't change? What if stepping back and letting your kids do for themselves was not an option? That's what it's like when your kids have special needs. It doesn't matter if they're 5, 10 or 15 or even 20! You're still running around after them making sure they're eating, bathing, brushing their teeth, properly dressed, healthy, safe, engaged, socialized and, hopefully, happy. When they're in school, you are worrying about whether their needs are being met, wondering if you're going to get a negative report or the dreaded call from administrators that there's been "an incident". When they succeed, you feel as if your heart will burst with pride. When they fall, your heart breaks for them. Living with this stress every day, we may not realize the toll it takes on us both physically and emotionally.

There are other challenges too. Having special needs children can be very isolating. Friendships are just as hard for us as they are for our kids both in the making and maintaining. It can be hard to make friends with parents of typically developing kids either because they can't relate to our situation or because many times we feel they are judging us or our kids, and sometimes maybe they are. The friendships we do have can be difficult to maintain if we don't feel we can make time for them.

We are all susceptible to dark days. I can tell you I have had a few. There have been times I felt so alone, defeated, like the whole world was against me and my kids. I felt I was failing them. Other days I have resented them. I felt sorry for myself and my situation. This would inevitably lead to feelings of overwhelming guilt and self-loathing.  Then there are the angry days where I just want to strangle someone like an ignorant teacher, an insensitive administrator, a bully at school.....and his/her friends who stand around and either egg him/her on or do nothing.....and his/her parents!!

Wait, what was I saying? Oh yeah.

The simple fact is many of us spend so much time meeting the needs of our children, we are constantly neglecting our own needs. Let this tragic incident be a wake up call. We need to stop. We have to take care of our own physical and emotional well-being. If we sacrifice ourselves in the process of caring for our children, everyone we care about, including those children, will eventually pay the price. While I think I can safely say that only a very small percentage of parents would ever consider harming their children, there are other, more common dangers to consider. Things like clinical depression, increased risk of heart problems or stroke, separation and/or divorce just to name a few.

What can we do?

• We must take care of ourselves by making healthy choices, at least once in a while. A scone and mocha from Starbucks is NOT a healthy breakfast (I know, I was surprised too!).
• We must not neglect our health. Keep up with yearly exams. You're no good to anyone if you're sick. 
  
• We must not neglect our other relationships like our spouses and our typically developing children. Try scheduling "date nights" with your spouse AND each of your other children. It doesn't have to cost any money. It's about the time and individual attention.
  
• We must take a little time out every day for ourselves. It's OK to be a little selfish. Indulge in a favorite hobby. Read a book. Have lunch with a friend. Go see a movie.
• We must, at least once a year, get away; preferably with your spouse, but with girlfriends, a church group or extended family is OK too. If you have no one to care for your special needs kids, check out your local support groups. Some may have weekend you-take-care-of-mine-and-I'll-take-care-of-yours groups or weekend camps/services they can recommend.

Taking care of ourselves and our needs is one of the most important things we can do for our special kids. The healthier we are, the better we are able to care for them.

Plus, we're teaching healthy habits too. Bonus!!

Inclusion: The Pointless Debate

Inclusion. The dictionary defines it simply as "the act of including, the state of being included" www.merriam-webster.com/dictionary/inclusion‎
It seems like a harmless enough idea. "All for one and one for all," "We're all in this together." It's nice to be included.

Yet, use the term in relation to Special Education and you may find yourself in the midst of a very heated debate. In this context, inclusion refers to the education of a student who receives special education services in the general education classroom. It can be for all or part of the school day. 

There are valid and well-supported arguments to be made both for and against inclusion in general. They seem to revolve around four central issues as they relate to ALL students, not just those with disabilities. They are:

• academic benefit,
• nonacademic benefit,
• classroom management and
• financial cost.

Do students with disabilities learn better academically in an inclusive classroom alongside typically developing peers? 
Does the presence of students with disabilities adversely affect the typically developing student's ability to learn? 
Does being in a regular classroom subject children with disabilities to bullying and ridicule? 
Does it help children in their social and emotional development to be in a more inclusive environment? 
Can a teacher be an effective educator in a classroom which includes students with disabilities?  

As I said, there are valid points to be made for and against inclusion in general. And therein lies the problem. Inclusion is not something that should be considered in general terms. Rather, as with everything else in Special Education, the nature and extent of inclusion in the general education classroom must be determined on an individual basis by the student's IEP team.  

The term "inclusion" isn't even used in the Federal statutes; nor is the term officially defined by the US Department of Education. It is an instructional model which, like mainstreaming and integration, developed in response to the IDEA requirement that students with disabilities be educated in the Least Restrictive Environment.  To be in compliance, Section 1412(a)(5) provides that States must ensure:

To the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled.

 And;

Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. (20 U.S.C. § 1412(a)(5)

So, while Federal law does require disabled students to be educated with their non-disabled peers as much as practicable, or "to the maximum extent appropriate," it also acknowledges that 100% inclusion in the regular classroom may not always be the best way to meet a child's specific educational needs. 

Unfortunately, as with most laws, there are always going to be examples of misinterpretation, misapplication and outright disregard to help fuel the debate. An inappropriate or unsupported placement in the general education classroom can result in a poor learning environment for everyone. On the other hand, the unnecessary segregation of a student whose needs can adequately be met in a general education setting can have devastating consequences for the child. 

In reading the public comments to different news articles and blog entries on the inclusion debate, I was startled by the pervasive misconception as to the nature and extent of the disabilities of students receiving special education services under the IDEA.  Again, there is this tendency to over generalize, using only students with the most severe cognitive disabilities as the example. In order to put things in perspective, I offer the following "general" information pulled from the most recent data provided by the National Center for Education Statistics:

• 13% of all students receive Special Education services 
  
• Of that 13%, 4.9% are students with a specific learning disability such as dyslexia and other information processing disorders.
• 2.9% suffer from speech or language impairments such as stuttering which inhibit their ability to communicate effectively.
• 1.4% fall under "other health impairment" which includes ADHD.
• 1% suffer from either an orthopedic, visual or hearing impairment or a developmental delay.
  
• 0.8% are classified with an emotional disturbance which includes anxiety disorders, OCD and eating disorders as well as bipolar and conduct disorders
• 0.8% fall somewhere on the autism spectrum
• A little over 1% are categorized as having an intellectual disability, a traumatic brain injury or multiple disabilities

U.S. Department of Education, National Center for Education Statistics (2012). Digest of Education Statistics, 2011 (NCES 2012-001), Chapter 2.

Given the diversity of the disabled student population, and the variance of severity possible within each disability category, the very idea of making decisions regarding how and where they should be educated on anything other than an individual basis seems preposterous.