Tips for Parents of a Child with a Disability or Chronic Health Condition

Plan ahead

Talk to your child’s doctors about transition to adult medical care. Many pediatric doctors are unable to take care of your child once they become an adult. It’s important to plan the transition with support from your current medical team.

Guardianship options and Supported Decision Making

Think about the support your child will need to make decisions and manage life as an adult. Once your child turns 18, a parent can no longer consent to medical treatment on their behalf unless a legal document gives them that authority. Support may also be needed to manage money, living arrangements, personal safety, relationships and self-care. Options include: Supported Decision Making Agreements, Power of Attorney, Durable Power of Attorney, Durable Power of Attorney for Health Care Decisions, Living Will, Guardianship (full or limited), and Representative Payee or Conservatorship (full or limited).

Education

Consider whether to apply to be your child’s Educational Representative with their school. Make plans for after high school. An educational representative is a parent, family member or other adult authorized to make educational decisions on behalf of an adult student. More information can be found about:

Talk with your child’s case manager or school counselor about when they will graduate from high school. Make plans for next steps such as more education or training for a job.

Social security

Decide whether to apply for Supplemental Security Income (SSI) for your child. SSI is a needs-based disability program for adults and children. It provides monthly cash benefits. This application is completed with Social Security around the time of your child’s 18th birthday. More information is at: http://www.socialsecurity.gov/pgm/ssi.htm

Medicaid

Consider whether to apply for Medicaid coverage for your child. Medicaid is a program that pays for medical care for those who can’t afford it. Eligibility for SSI usually qualifies someone for Medicaid in Kansas and Missouri. Applications for both must be completed. More information is at:

Medicaid waiver

Learn about Medicaid Waiver programs for people with disabilities. Missouri and Kansas both have waiver programs. Each one has a specific process for applying and eligibility. The waiting lists for Developmental Disabilities (DD) and Intellectual Disability (ID) waiver programs can be very long. If you want to apply, you should act early. People can be on one waiting list while receiving services from another program. More information is at:

Finances

Think about the financial needs of your child when you are no longer available to care for them. Begin to put the necessary plans in place. Consider whether to create or revise your estate plan. If your child will need Medicaid, SSI or other government assistance, learn about a Special Needs Trust. Decide if one would be good for your situation. A Special Needs Trust allows you to plan for your child’s financial future upon your death. It may prevent disqualification from governmental programs due to an inheritance.

ABLE Accounts

The ABLE ACT of 2014 created saving and investment accounts for individuals with disabilities. Every state has established these accounts. It allows you to put money tax-free into an account for disability-related expenses without affecting eligibility for benefit programs such as Supplemental Security Income (SSI) and Medicaid.

Learn more at MO ABLE and Kansas ABLE.

Adapted from Hampton Roads Consortium for Children and Youth Workgroup and King’s Daughter Medical Center.

Important note: Children’s Mercy provides this list of tips and resources as a courtesy only. This list is not exhaustive or reflective of every consideration to be evaluated. The information does not constitute legal advice or an endorsement or recommendation by Children’s Mercy of web sites, the information contained therein, the organizations, or the services provided. Children’s Mercy is not responsible for the content of external web sites. The hospital does not take a position as to whether guardianship, conservatorship, or other legal processes described herein should (or should not) be sought for a particular individual, or whether an attorney should be engaged for any such process. Children’s Mercy is not responsible for your individual outcome and experiences, which may vary.