Planning for your Child’s Special Needs –Transition through Retirement

Written by: Lakshmi Mahadevan, Ph.D., Associate Professor and Extension Specialist – Special Populations, Texas A&M AgriLife Extension Service.

Why plan for transition?

One day, very soon your child with disabilities will reach the age of 14 – this is when schools may consider transition planning. Transition planning helps prepare young people for their futures. It helps them to develop skills they need to go on to life after high school. It builds skills for activities of daily living, working, recreation, independence, adult decision-making and retirement (PACER Center, n.d.) .  By the age of 16, the individualized education program (IEP), developed under the Individuals with Disabilities Education Act (IDEA), must address transition services requirements and is updated thereafter.  The IEP must include:

  • appropriate measurable postsecondary goals based upon age-appropriate transition assessments related to training, education, employment, independent living skills and retirement,
  • the transition services (including courses of study) needed to assist the student with a disability in reaching those goals).

How can parents help plan for transition through 0 to 16 years?

1. Consider responses to the following questions:

  • What does your child want to do with his or her life?
  • What are his or her dreams, aspirations, or goals?
  • What long-term outcomes do we want to see from the transition process?

2. Discuss with him or her their career profile and potential employment trajectory.

3. Teach your child self-advocacy skills – (Tips for helping your high-schooler to learn to self-advocate) .

4. Encourage your child to participate in their IEP meetings.

5. Help your child state their needs and desires at the meetings.

6. Consider what accommodations and modifications are appropriate for your child both at school and at the post-secondary level (employment or higher education).

7. Find employment opportunities and help your child volunteer, intern or work study.

8. Refer to ‘Empowering Parents to Become Effective Advocates,” to learn more about how to advocate for your child through the special education/transition journey.

How can parents help plan for transition through 16 through high school graduation?

1. Help your child complete graduation requirements (based on IEP goals).

2. Work with school’s transition specialist and Career and Technical Education teachers to study the local labor market.

3. Seek and apply for employment positions or higher education placements that match your child’s transition goals.

How can parents help plan for transition their child’s adulthood through their retirement?

1. Set a realistic budget that can help support your child as he or she transitions into adulthood. Consider setting aside money in bonds or checking accounts– which by the age of 18 years, can be transferred into either a tax-advantaged 529 ABLE (Achieving a Better Life Experience Act) account or a special needs trust. ABLE accounts are set up in a child’s name and allow contributions of up to $14,000 per year to cover expenses like education, housing, health care, prevention and wellness (Refer: Able Account or Special Needs Trust: How to Decide? ) Note: Adults with disabilities are only eligible for Supplemental Security Income or Medicaid if their total assets do not exceed $2,000.

2. Be flexible in considering your future scenarios. While it is highly likely that your child will have the education, life skills and maturity to live independently or in a group setting, it is also possible that he or she may not. Take a long view of the future and consider when you or your partner may retire from the workforce, or if both parents stay in the workforce and hire someone to provide additional in-home support services for the adult son or daughter with disabilities.

3. Plan smartly and as early as possible. Consider guardianship for your child under the age of 18, establish medical directives and power of attorney. Finally, prepare in conjunction with a special needs lawyer a will. Remember raising a child with a disability could add higher cost and stressors into financial planning – planning for contingencies can help offset these factors. Develop a lifetime care plan – one which details the specifics of long-term care that your child might need.

4. Document your vision. Create a “Letter of Intent” and write down your instructions to communicate information about your child as well as your vision of the future.

5. Share with family members or potential caregivers your lifetime care plan and letter of intent.

6. Consider the following when planning for independent living skills (Refer to 6 Independent Living Skills Kids Need Before Moving Away from Home):

  • Does he or she have any special employment, housing, social and recreational interests?
  • What types of housing accommodations do you anticipate for your adult son or daughter?
  • Will he or she require any special transportation accommodations?

The journey of creating a lifetime of continuous care for your son or daughter with a disability is daunting. But it would be less overwhelming if you start early, plan smart and are well-organized. Use the above resources and the checklist provided to get started.

Retirement Planning Checklist

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