Complex care

Parenting and raising a child/youth with complex health care needs, who also may have intellectual and developmental disabilities can be challenging. Thinking about your child becoming an adult can feel overwhelming.

• Decision-making changes when your child turns 18 and becomes an adult. It is important to think about this when your child is about 17 years and 6 months old. 
• Supported Decision-making and Adult Guardianship are two options, however there are more. 
• Completing the adult guardianship process by your child's 18th birthday is best. Supported Decision-making can be accomplished at or after their 18th birthday. 
• Health Care – work on shifting to a Primary health care provider first. A new adult provider can inform you about adult specialists.
• Insurance – Katie Beckett Program (KBP) ends on your child's 19th birthday. You will receive a letter informing you of this change.
• Youth may remain on their parents private policy until age 26 and sometimes indefinitely depending on your employer.
• Adult SSI – If your child is on Child Supplemental Security Income you will need to contact the Social Security Administration to re-apply for your child as an adult. Qualifying for adult SSI will provide T-19/Medicaid plus a monetary check and is based on the young adult’s income and not the family income.

Decision making

Age of Consent for Treatment (for the State of WI)

As your child ages, there will be changes in the consent process for their care. 

• Alcohol and other Drug Addiction (AODA) (patient age 12 or older can consent)
• Mental health (patient age 14 or older can consent as well as their guardian) 
• Reproductive decisions / STI testing (patient age 14 or older can consent) 
• Medical care (patient age 18 or older can consent provided they do not need an adult guardian, or patient age 16 or older who is married can consent) 

At the age of 18 your child legally becomes responsible for their health care unless the court has appointed a legal guardian due to cognitive impairments.  If your child is their own guardian they should complete an advanced directive and sign releases of information for the people you’d like to be involved in your medical care.

Advance medical directives

• Advance directives document
• Forms- advance directives

Young adults that can manage some of their healthcare independently should consider supported decision-making to identify people that can provide help with life decisions.  Please contact a Children’s WI social worker for additional information. 

Parents/caregivers of young adults who are unable to make decisions on their own behalf, will need to complete a legal transfer of guardianship.  This process requires a hearing in front of a judge.  Please contact a Children's WI social worker for additional information. 

• Supported decision-making 

Guardianship resources

• Transition to adulthood: Adult Guardianship document
• Wisconsin Guardianship Support Center 
• For more guardianship information please call (414) 266-3465

Choosing a new doctor

It is important that youth and young adults choose a primary care doctor and specialty providers they trust and feel comfortable with. Ask your pediatric providers if they have recommendations or will make referrals. Please check with your insurance to learn more about who is covered under their insurance plan. 

• Transition to adulthood: Finding the right doctor
• Medical summary emergency plan

Health care

Healthcare insurance through your parents: Your child may be able to stay on your private insurance. If your insurance plan covers children, your adult child may be able to stay on your plan until age 26 years old or longer if your child has a verified disability that started before age 22. Talk to your employer’s human resource department.

Insurance

Government Insurance options 

• Marketplace insurance (also known as ACA/Obamacare): Almost everyone can get a Marketplace insurance plan. Financial help is based on how much money you make. For more details call 1-800-318-2596 or visit website.
• Medicaid (may be called BadgerCare): In Wisconsin, your insurance will change when you turn 19 years old. You will need to apply for your own plan. The BadgerCare plan is based on how much money you earn. To apply for Medicaid (BadgerCare) visit their website.
• Medical Assistance Purchase Plan (MAPP) allows people with disabilities who are working, or want to work, to get insurance through the Wisconsin Medicaid Program. You may have to pay for it. It will depend on how much money you make.

Additional Insurance topics and changes that happen as an adult

• If your child is on Katie Beckett Program Medicaid: If your child has insurance through the Katie Beckett Program Waiver it will end when your child turns 19 years old. You will get a letter about what to do next. You should apply for insurance through one of the government (Medicaid) programs described.
• Supplemental Security Income (SSI): Adults with disabilities may be able to get SSI. 
  Apply in the month your child turns 18 years old. Do not apply earlier or parents’ income will be counted. If your child qualifies they will receive Medicaid coverage. To start the process call Social Security Administration (SSA) at 1-800-772-1213 or go online. Ask your clinic social worker if you need help.
  If your child receives SSI as a child you will need to re-apply as an adult in the month of your child's 18th birthday.

School

• Individualized Education Plan (IEP) or 504 Plan: Your child can stay in school until they earn enough credits to graduate or turn 21 years old.
  Before leaving high school, talk to your child’s transition coordinator, guidance counselor or vocational teacher at their school. They can help you make a plan for your child’s future. Be sure to get a copy of your child’s last IEP before the end of their school career. This will be important for accessing some services in the adult long term support area such as day programs.

Aging and disability resource center

At age 17.5 contact the ADRC in your county. They can help you understand and access long term support funding services your child might need. For information about your county’s ADRC, visit their website.

If your child is enrolled with the Children’s Long Term Support (CLTS) waiver the service coordinator will help with the transition to the adult long term support programs.