Healthcare Transition and Medical Self-Advocacy

When young people turn 18, a lot happens. Adult responsibilities and decisions can feel scary and confusing for the unprepared. Becoming responsible for medical care is part of growing up, and that process is so critical that there’s a specific name for it: healthcare transition.

For example, at age 18 a young adult is responsible to sign official paperwork to authorize procedures or therapies. They must sign documents to say who can look at their medical records, talk to their doctors, or come to an appointment with them. Those rules are part of HIPAA, which stands for the Health Insurance Portability and Accountability Act. HIPAA is a federal law that protects confidentiality, regardless of disability.

In this video, young adults living with various disability and medical conditions talk about their journeys in the adult healthcare system. They talk about how they make decisions and how they ask for help. Their ability to explain their needs, make decisions, and speak up for themselves is called self-advocacy. Take a look and listen to what they have to say in their own words!

For more information and resources around healthcare transition and self-advocacy, follow these links to the Family to Family Health Information website.

PAVE also has a Healthcare In Transition article that will give you detailed information for individuals transitioning from Pediatric (Children’s) to adult health care including information on health insurance and providers.

Another place for information is the Informing Families website, which includes a section called got transition.

Including Health Considerations in the Transition Plan

Parents, Students, and everyone on the IEP team should think about how health and healthcare can affect a student’s goals for college, work and living on their own. PAVE has made a fillable form that you can download when starting to think about this area in transition.

Including Health Considerations in the Transition Plan

Supported Decision Making is an Option for Adults with Disabilities

A Brief Overview

  • In Washington State, Supported Decision Making (SDM) is a legal option for supporting a person with a disability after their 18th birthday.
  • The format for an SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org.
  • The final section of this article provides information about other options to support and protect a loved one with a disability.
  • Help is available from the Developmental Disabilities Ombuds.

Full Article

When a young person turns 18, most decisions are now up to them. In Washington State, age 18 is the “age of majority,” which means a person 18 or older has the right to make their own decisions about education, work, money matters, voting and more.

Note: In Washington the age of independence for health care decisions is 13, with some behavioral healthcare exceptions related to Family Initiated Treatment (FIT).

When a person 18 or older has a disability, family members may want to stay involved in helping them make decisions. Supported Decision Making (SDM) is the formal name for one legal option.

Washington law (Chapter 11.130 in the Revised Code of Washington) includes Supported Decision Making as an option under the Uniform Guardianship, Conservatorship, and Other Protective Arrangements Act. The law changed in 2020 when the state passed Senate Bill 6287. The changes took effect Jan. 1, 2022.

The law includes Supported Decision Making as an alternative to more restrictive arrangements that put limits on an individual’s rights. The final section of this article includes information about other options, such as guardianship.

What is Supported Decision Making?

Supported Decision Making (SDM) is an agreement to make sure an adult with disabilities has trusted helpers watching out for their well-being. An SDM agreement does not remove the adult individual’s rights but creates a way for the individual and their supporters to make choices together.

For example, a student older than 18 who receives special education services at school might agree to have their parent continue to participate in decisions about their Individualized Education Program (IEP). Parent and student then work together as members of the IEP team.

Supported Decision Making may be combined with a Person Centered Plan to ensure that a person has circles of support as they work toward adult life goals. Like Person Centered Planning, SDM changes with the needs of the individual and their supporters.

What should be included in the agreement?

An agreement for Supported Decision Making is written to meet an individual’s needs and preferences. For example, a person might choose support in one or more of these areas:

  • Medical care
  • Dating or sexual intimacy
  • Living arrangements
  • Employment
  • Education
  • Finances

The agreement includes the names of supporters and their relationship to the person. Supporters might be:

  • Parent
  • Other family member
  • Friend
  • Trusted professional
  • Someone else

The agreement is signed in front of a Notary Public by the adult with disabilities and all selected supporters. Everyone must provide picture identification for an in person signing or follow alternative identity verification methods for an online signing.

How to document their SDM agreement is up to the individual and their supporters. A sample form is available for download from WashingtonLawHelp.org. The sample form offers the following suggested language:

“My supporter is not allowed to make decisions for me. To help me with my decisions, my supporter may:

Help me access, collect, or obtain information that is relevant to a decision, including medical, psychological, financial, educational, or treatment records;

Help me understand my options so I can make an informed decision; and

Help me communicate my decision to appropriate persons.”

The suggested format includes options for the individual to choose whether selected supporters will have access to protected health information under the Health Insurance Portability and Accountability Act (HIPAA) or educational records under the Family Educational Rights and Privacy Act (FERPA).

Is Supported Decision Making free?

There may a small cost to get a document signed in front of a Notary Public.

TIP: If someone on the agreement has a bank account, their bank may provide free Notary services. Public libraries and county courthouses are additional places to ask about free options to have a document notarized.

The SDM agreement does not have to be filed with a court, but it is a legal agreement.

Resources for Supported Decision Making

What if my family wants another choice for support and protection?

Supported Decision Making is one option when a family wants to support and protect a loved one with a disability. Below are options that may involve legal assistance and/or a court process. Washington Courts provides information about various types of courts and how to find them within the state.

Guardianship of an Adult: A court-appointed person makes decisions for the adult with disabilities. Guardianship may be combined with Conservatorship (see below). Guardianship is the most restrictive option and may not be granted unless there is evidence that less restrictive alternatives are unworkable.

Conservatorship of an Adult: A court-appointed person makes property and/or financial decision for the adult with disabilities. Like guardianship, the petition may be denied if less restrictive options are not tried first.

Informed Consent: This is a limited option for supporting medical decisions when a health care provider determines that an individual is unable to properly understand their condition or make fully informed decisions (RCW 7.70.065). Note that an individual with a Supported Decision Making (SDM) agreement may be able to demonstrate they can make their own decisions about healthcare with the help of their supporter.

Power of Attorney: An individual can sign a legal document to give someone else power to make decisions in their behalf under limited or general circumstances. A Mental Health Advance Directive, to be invoked if someone with a mental illness loses capacity, is an example of a limited Power of Attorney document that an individual might choose to sign. Washington Law Help provides a Q and A on Powers of Attorney.

Special Needs Trust: An account can protect funds for individuals receiving Supplemental Security Income (SSI) and/or Medicaid. A Trustee is appointed to manage the funds, which commonly are used to pay for things that SSI or Medicaid benefits do not cover. Trustees are legally responsible if they do not use the Trust for the benefit of the individual. Washington Law Help provides information on Special Needs Trusts.

Representative Payee: The Social Security Administration (SSA) may determine that an individual receiving benefits needs a payee to manage their income. If an individual disagrees with the administration’s decision to appoint a payee, they must present evidence of their ability to manage their money. Disability Rights Washington (DRW) provides information about how to change, remove or report a representative payee.

Protective Arrangement: A court-appointment person makes decisions for the person with disabilities related to specific and limited conditions, such as specific medical decisions or contact with a specific individual who might cause harm. The Vulnerable Adult Protection Act provides protection to adults in Washington State who meet one or more of these criteria:

  • 60 or older and functionally, mentally, or physically unable to care for themselves
  • Have a court-appointed guardian
  • Have a developmental disability
  • Live in a nursing, adult family, or boarding home or other facility
  • Served by home health, hospice, or home care agencies
  • Receive services from an individual care provider or personal aide

NOTE: Anyone who suspects physical harm, someone being held against their will, sexual abuse, neglect, financial exploitation, or abandonment can call Adult Protective Services: 1-877-734-6377 or Report Online.

Additional Resources

Legal Disclaimer: It is the policy of PAVE to provide support, information, and training for families, professionals, and interested others on a number of topics. In no way do these activities constitute providing legal advice. PAVE is not a legal firm or a legal services agency and cannot provide legal advice. The information within this article is not intended as legal advice and should not be used as a substitution for legal advice.