Many parents set up funds to help provide for their child’s college education (529 Plans), but what happens if your child has special needs and is unlikely to need a college fund, but may need money to help them successfully transition into independent adulthood? Before 2014 there was no provision for that kind of tax-advantaged savings plan. However, in 2014 the ABLE (Achieving a Better Life Experience) Act was signed into law and in June of this year, the financial vehicles for those accounts finally became available in a few states.
The ABLE Act is now being tweaked by Congress to allow for higher savings limits and to allow families to roll over funds from a 529 account into an ABLE account. This is fantastic news for families.
Image Credit: © Creative Commons “Washington Capitol Hill” by Arend is licensed under CC
Do you ever feel like you have so much information spinning around in your head, that it’s about to explode? I often do and this morning when I was purusing my Special Education newsfeed on Feedly, I came upon this excellent post:
Unsubstantiated reports are widely circulating that the head of a special needs mom has exploded.
At the scene of the incident, in a local Michael’s store, bystanders were shocked to see an astounding amount of information shooting out of the head including contact info for dozens of doctors, therapists, sitters and the special needs school district coordinator; her child’s weekly schedule of therapies; data from seven years’ worth of IEPs; insurance policy numbers, the claim P.O. box address and all the bills she’d submitted but hadn’t gotten reimbursed for; the longest to-do list in the history of mankind; an equally long list of stuff she never did get around to; assorted medical jargon; details about developmental milestones she read in those “What To Expect” books years ago before she forced herself to stop reading those books; names of various adaptive programs; special needs financial planning tasks she was in denial about; a list of exercises the therapists recommended she try with her child; a list of apps the therapists recommended she download; a list of products the therapists recommended she buy; a pervasive vague feeling she’d forgotten to fill out an important form; volumes of guilt; various memorized recipes from Lipton soup boxes; plus the phone number of her best friend from third grade.
If your student is preparing to transition from Special Education in High School into College there are several savvy questions they should ask at the Disability Services office to help them understand what is help and support is available. These sample questions are from pdf called “Preparing Your Special Needs Student for College” from the Georgia Department of Education.
- How many hours are tutors available? Is there a limit to the number of hours per week per student?
- Is my advisor trained to work with students with LD issues?
- Are there added costs for the services I need?
- Will my professors be notified of my LD/ADHD and is the notification done by the student or the Program Director?
- Are course substitutions allowed?
- Is any other assistive technology or human professional help available that I have not already asked you about?
I particularly like the last part of the last question…. it’s a phrase that we should all put into our vocabulary. Is there help available that I have not already asked about? Frequently, answers are not given because the questions are not asked. By asking this open ended question, we put the focus back on obtaining the necessary help without having to know exactly how to ask for it.
Some days, it all just feels like Too Much. I know. I’ve been there. When you realize that the solution you thought would make it right, turns out to have obstacles and brick walls of it’s own. Today is one of those days.
© Creative Commons “Amelia’s Sad Face” by Donnie Ray Jones is licensed under CC
In an attempt to pull myself out of the depths, I searched for solutions online (my go-to resource) and found an article on the Huffington Post about Antidotes to Discouragement. There are some great suggestions here, but I think the one I like best is this:
HELP SOMEONE ELSE: The fastest way to get back to your heart is to extend yourself and give to someone else with anything they might need.
Start taking action, doing something to help someone else move forward, is the fastest and most effective way to overcome discouragement. So, here I am. Doing what I can to help families navigate the special education system, to help them help their students move forward toward successfully independent lives. Some days it is overwhelming, some days you are discouraged, but I think the important thing is just keep moving forward and to lend a hand to someone else whenever you can.
One of the toughest things for families is to start thinking about “Transition to Adulthood” when their student is just in the midst of transition to adolescence!
Transition planning, from the family’s point of view, should begin at 14 years of age. While the law was changed in 2004 to shift transition planning requirements from Age 14 to Age 16:
Transition. Congress made extensive changes to the legal requirements for transition. IDEA 97 required “a statement of transition services needs” (beginning at age 14) and “a statement of needed transition services for the child” (beginning at age 16). The statement of transition services needs at age 14 was eliminated.
Under IDEA 2004, the first IEP after the child is 16 (and updated annually) must include:
“…appropriate measurable postsecondary goals based upon age appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills … and the transition services (including courses of study) needed to assist the child in reaching these goals. (Section 1414(d)(1)(A)) – See more at: http://www.wrightslaw.com/idea/art/iep.roadmap.htm#sthash.8trIdbhi.dpuf
It still makes sense for families to start discussing the needs and goals of a student as early as possible. Start discussing with your student their ideas about life after High School and specifically the following “domains of adulthood.”
- postsecondary education,
- vocational education,
- integrated employment (including supported employment),
- continuing and adult education,
- adult services,
- independent living, or
- community participation
Getting an idea of where your student wants to go in life will help you when it’s time to start putting transition goals and services into the IEP. If you don’t feel your student is ready to start thinking quite that far ahead, you, at least, can start to plan ahead. There’s a great resource at the Transition Coalition website, called the Parent Transition Survey.
Learning and Practicing Self-Advocacy is one of the greatest obstacles in transitioning to independence. Parents tend to take on many of the advocacy roles for their students and may have a hard time letting them go. This is often because early on, we are the only ones who can successfully advocate for our children. However, as they grow, mature and move toward independence, the need for self-advocacy becomes more and more important.
Last week, Federal officials announced that they are allocating funds for the development of a National Resource Center for Self-Advocacy. This is very good news! While the real work of self-advocacy training happens at the family level, the fact that the government is recognizing the need for additional resources can only be a good thing.
The self-advocacy movement is a human and civil rights movement, stemming from the civil rights movement of the 1960’s, but led by individuals with intellectual and developmental disabilities to ensure they have the same rights, responsibilities, and opportunities as people without disabilities. Starting internationally more than 40 years ago, the movement has empowered individuals to make choices in their lives, provided opportunities to have a voice, and opened pathways for leadership development.
Read more about it:
I have mentioned before that one of the obstacles in Special Education Transitions is that Parents/Families and Teachers/Administrators seem to be on opposite sides of the fence and there is a pervasive feeling that “never the twain shall meet.” There are ways that parents can try to smooth the path to cooperation and collaboration, but it also helps tremendously when educators work toward that goal as well. I found a wonderful article this morning about the promises every special educator should make to their students’ parents.
1. I promise to stop calling parents who have high expectations and advocate for their children “high maintenance” and I will equally try to discourage the term “high profile” if due process is involved.
2. I promise to presume competence (always assume that your child can learn and is interested in learning) even if they are unable to communicate to me what they know (yet!)
3. I promise to never use the “R” word and to speak up against it when I hear it used in private or public.
4. I promise to ask your input on the educational goals for your child BEFORE the IEP meeting and realize that without your collaboration we have no team.
5. I promise to remember that YOU were your child’s first teacher and YOU are THE expert on your child.
6. I promise to not say “what are they going to get out of this?” or “they’re not ready” as an excuse for not including your child in general education.
7. I promise to never assume I know what goes on at your home or blame your child’s challenging behavior at school because of your parenting skills.
8. I promise to Always Be Communicating (ABC) with you about your child (especially the positive things).
9. I promise to keep an open mind and realize that what works with one child does not necessarily work with every child.
10. I promise to always have high expectations for your child and never give up on them…or you.
11. I promise to keep telling your child the reasons why I love to be their teacher.
Read a great article this morning on the Special Education Law Blog by Charles P. Fox.
The key takeaway for parents is about the need to document and as Mr. Fox puts it “memorialize” the testing accommodations needed by your student. This is important not only for the regular in-school tests, but also for “High Stakes Testing” like the ACTs, SATs and even post-school tests like professional licensing exams, admissions to professional schools etc.
… the DOJ states that “if a candidate previously received testing accommodations under an Individualized Education Program (IEP) or a Section 504 Plan, he or she should generally receive the same testing accommodations for a current standardized exam or high-stakes test.”
This is particularly important for high achieving students with disabilities….
Previously, parents frequently were told that students with high grades weren’t eligible for accommodations, no matter how much extra effort compared with their peers that these students had to expend to achieve their grades. According to the document, “. . . someone with a learning disability may achieve a high level of academic success, but may nevertheless be substantially limited in one or more of the major life activities of reading, writing, speaking, or learning, because of the additional time or effort he or she must spend to read, write, speak, or learn compared to most people in the general population.”
The laws and circumstances may change, but the themes stay the same: Ask the Right Questions, Research! and DOCUMENT EVERYTHING.
An IEE, which stands for Independent Educational Evaluation, is the Special Ed version of a second opinion. We’ve talked about the importance of Evaluations (http://spedtransitions.com/dont-decline-triennial-evaluations/). But what happens if you and your student don’t agree with the school’s evaluations?
Parents may obtain only one IEE at public expense each time the school district conducts an evaluation with which the parents disagree. 34 CFR Section 300.502(b)(5). The purpose of this regulation is to protect the parents’ right to an IEE (OSEP rejected a suggestion limiting a parent to one IEE in a child’s school career) while ensuring that a school district does not have to bear the cost of multiple IEEs concerning a single disagreement. 71 Fed. Register No. 156 at page 46690 (August 14, 2006).
When should you request an IEE?
A dispute may arise regarding who performed the school’s evaluation (qualifications), how that person performed the evaluation (assessment tools or methods), the results of the evaluation or the structure of the IEP resulting from the school’s evaluation. This is especially true if you as the parent are observing things that are different than those that were described in the evaluation or are hearing different things from your child’s physicians and therapists.
Now is the time to request an IEE at the school’s expense. “A parent has the right to an IEE at public expense if the parent disagrees with an evaluation obtained” by the school. Once you, the parent, request an IEE, the school must either agree to pay for the IEE or file a due process complaint to show that its own evaluation was appropriate.
New from the Connecticut State Department of Education Bureau of Special Education outlining the “Transition Bill of Rights” for Students with IEPs.
This is a very handy document that outlines the important aspects of transition planning and helps families to be aware of what they should be thinking of as they enter the transition years. In my viewpoint, there are a couple of items of particular importance for transition planning in this document:
#5 – Develop realistic and specific post-school outcome goal statements (PSOGS) that are measurable…. (emphasis added).
This is an area that most families don’t pay too much attention to, because they are trying to get the appropriate educational services implemented and they are not really thinking too much about transition to “adult life,” but these goals are very important to help determine the future programming for your student and for the “transition-only services” mentioned in item #10.
#10 – Request consideration for receiving transition-only services between the ages of 18 and 21, if all transition goals and objectives have not been met during the previous years in high school. (emphasis added).
This is an important item to be aware of because the “transition-only” services are not an entitlement, but a “consideration” for students once they reach the end of the regular high school years. The only way a student will receive transition-only services is if “transition goals and objectives have not been met during their previous years in high school.” Writing and documenting the transition goals and objective requires careful planning, making sure that the goals encompass all the needs of the student for successful transition to adult life.