Starting at age 15, planning for the Future

This past weekend, my younger son turned 15.  Fifteen is a nice, solid number, but it is a “not-quite” age.  Not-quite old enough to drive, not-quite old enough to work, at least that’s the case for most employers.  It is a birthday that can go a bit unnoticed.  For children with disabilities and their families, the focus is often on age 18.  It is true that 18 is an inflection point.  Prior to the children’s age 18, parents have control and veto power over their children’s decisions and automatic access to their children’s educational and medical records.  After the children turn 18, the parents need some kind of legal arrangement to access records and influence decisions.  Prior to the children turning 18, many are not eligible for government benefits because the family’s income is too high or financial assets are too many.  Once the children turn 18, they may qualify for such benefits because their own individual income is too low and their own assets are too few.  But while it is important to keep one’s eyes on the tasks that need to be done in haste, once the child turns 18, there are, in fact, some tasks that the family can work on between the time the child turns 15 and the time s/he turns 18.  For example:

• Help your child to obtain a driver’s license or state ID.  Both the Federal Social Security system and the state Medicaid and SNAP systems strongly encourage the application and management of benefits through their respective online portals.  These portals, in turn, require identify verification.  One of the documents, used for identity verification in both systems, is a driver’s license or state ID.  A state ID can be obtained at any age.  A driver’s learner’s permit can be obtained at 15 as a step towards obtaining a driver’s license at age 16.

• Obtain current neuropsychological testing.  Public schools are required to do a complete reevaluation every three years for students receiving special education services.  Students whose special education eligibility category is intellectual disability will need a recent IQ and adaptive-behavior test scores to apply for Social Security Disability (SSI or SSDI) under the same category.  Students who receive special education under the category of autism spectrum disorder will benefit from having recent scores on one of several Autism Ratings scales. 

• Obtain current physical testing.  Students who receive special education for vision or hearing impairments will benefit from having recent test results for the limitation of those senses.  Students who receive special education support for speech and language, fine or gross motor, balance and mobility, or other physical deficits will benefit from having recent speech, occupational, or physical therapy evaluations.

• Update IEPs or 504 plans for most current special educational eligibility categories.  Certain special education categories, such as intellectual disability, autism spectrum disorder, blindness/vision impairment, deafness/hearing impairment, developmental delay, orthopedic impairment, and traumatic brain injury have close counterparts in the Social Security adult listing of impairments.  Other categories, such as specific learning disorder, emotional disability, and multiple disabilities, are meaningless to Social Security staff.  It is much easier to get through the Social Security application process with one of the former.

• For disabilities that have their own IEP eligibility section, make sure all sections are populated.  Generally, there is a full section to describe eligibility under intellectual disability and/or under autism spectrum disorder.  Within each section, there are subsections to discuss each of the student’s limitations, according to the DSM-V description of that impairment.  It is best if all subsections are populated.

• Request work-based learning opportunities in IEPs.  Social Security determinations of disability hinge on whether the applicant’s impairment(s) preclude her/him from performing work that is “substantial” and “gainful”.  How a student’s impairment(s) limit her/his capacity to work can best be demonstrated through notes on the student’s performance and need for accommodations and support while performing or attempting to perform work- related activities, whether in an actual or simulated work environment.

• Consider whether your need to relocate financial assets.  Most students will be applying for Supplemental Security Income (SSI) and Medicaid, both of which impose limits on “countable resources”.  These limits are $2,000 for SSI and $17,500 for Illinois Medicaid in most eligibility categories.  Other states will have their own Medicaid limits.  SSI has a three-year “look back” and Medicaid has a five-year “look back” to discover assets that have been given away.  “Countable resources” are generally cash and things that can be turned into cash, such as stocks, bonds, mutual/index funds, and other investments.  Take particular note of custodial accounts such as either Uniform Transfers to Minors Act (UTMA) or Uniform Gifts to Minors Act (UGMA) accounts.  These accounts become the asset of the beneficiary, once the beneficiary reaches the age of majority.  Even if they are not countable resources at the time of application, they will later become such and it is best if they are re-positioned prior to application.  ABLE accounts are exempt from counting as are assets held in a Supplemental (or Special) Needs Trust of which the applicant is the beneficiary.

• Consider different levels of future decision-making support.  When a person turns 18, s/he is considered an adult with full capacity to make decisions and eligible for full financial and medical privacy.  From that point, parents are not able to freely access their child’s medical and financial records nor to override or undo decisions their child has made.            There are legal structures that allow parents to continue to assist their children with disabilities in making health care, financial, and other key decisions.  The least restrictive of these is Powers of Attorney.  In this case, the child may make her/his parents agents via a financial or health care power of attorney.  This will allow the parents to obtain information relevant to medical and financial decisions, but the child is still the one making the decision.  Through the guardianship process, the child is declared by a court to be incapable of making such decisions, which then become the sole responsibility of the parents/guardians.  Partial guardianship allows the parents/guardians to make most decisions, but carves out areas of independence, such as permitting the ward to drive a car.  While you cannot complete any of the legal documents prior the child turning 18, you can know in advance which documents you will use when s/he does.

When your child with a disability turns 18, you will find yourself scrambling to take many steps to secure and manage your child’s future.  It can ease the stress noticeably to accomplish what you can in advance.