Saving for the Future: ABLE Special Needs Trusts

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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 

Is your Head about to Explode?

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:

Breaking: Special Needs Mom’s Head Explodes

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.

Reference: http://www.lovethatmax.com/2016/09/breaking-special-needs-moms-head.html

Family Transition Planning should begin by Age 14

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!

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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

reference: http://www.parentcenterhub.org/repository/transitionadult/#domains

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.

SPED Transition Bill of Rights

New from the Connecticut State Department of Education Bureau of Special Education outlining the “Transition Bill of Rights” for Students with IEPs.

Transition Bill of Rights

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.

 

Don’t Decline Triennial Evaluations!

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Sec. 300.303 Reevaluations.

(a) General. A public agency must ensure that a reevaluation of each child with a disability is conducted in accordance with Sec. Sec. 300.304 through 300.311–

(1) If the public agency determines that the educational or related services needs, including improved academic achievement and functional performance, of the child warrant a reevaluation; or

(2) If the child’s parent or teacher requests a reevaluation.

(b) Limitation. A reevaluation conducted under paragraph (a) of this section–

(1) May occur not more than once a year, unless the parent and the public agency agree otherwise; and

(2) Must occur at least once every 3 years, unless the parent and the public agency agree that a reevaluation is unnecessary.

(Authority: 20 U.S.C. 1414(a)(2) ) Reference: IDEA Website

The law permits the triennial evaluation to be dispensed with if the parent and the district agree that the re-evaluation is unnecessary. Because of the time and costs associated with a reevaluation, it is likely that, if the student clearly continues to qualify for special education services, the school will recommend dispensing with the triennial evaluation. I urge you NOT to agree with this. The purpose of the triennial reevaluation is not only to determine continued eligibility for special education services, but also to “assess whether any additions or modifications to the special education and related services being provided are needed to help the child meet the child’s IEP goals.” Since we know how fast our children change and how their needs change with them, it is almost always very valuable to have the triennial evaluations completed. Needs drive Goals and Goals drive Services. The first step is always to identify the needs of the student. Triennial Evaluations can help you do that more completely.

Age of Majority and the Transfer of Rights

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In a state that transfers rights at the age of majority, beginning at least one year prior to the student reaching the age of majority under state law, the student’s IEP must include a statement that the student has been informed that his or her rights under Part B, if any, will transfer. The school must comply with IDEA notification requirements to both the student and the parents.  National Center on Secondary Education and Transition

It’s important for families to understand the legal implications of a student reaching the age of majority and to talk about decision-making before that point. If your student feels that they are not ready to make decisions about their education on their own, an Educational Power of Attorney can be instated, which allows parents to actively participate in the decision-making as related to education and transition services for their student. A sample of an Educational Power of Attorney can be found by clicking here.