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.

Parents with Disabilities Have Rights

Brief overview:

  • For nearly 100 years, parents with disabilities have experienced fewer rights than their non-disabled peers.
  • The Rehabilitation Act of 1973 (Section 504) and Title II of the Americans with Disabilities Act (ADA) protect parents and prospective parents with disabilities from unlawful discrimination in the administration of child welfare programs, activities, and services.
  • Despite legal protections, parents with disabilities still are referred to child welfare services and permanently separated from their children at disproportionately high rates.
  • Parents who believe they have experienced discrimination may file an ADA complaint online, by mail, or by fax. Another option is to file a complaint with the Office for Civil Rights through the Department of Health and Human Services (HHS). Read on for details about how and where complaints are filed.

Full Article

In 1923, the Supreme Court of the United States (SCOTUS) established parental rights, but four years later parents with disabilities were denied those protections. In Buck v. Bell, May 2, 1927, SCOTUS ruled that persons with disabilities do not have fundamental rights to make private decisions regarding family life. The Americans with Disabilities Act (ADA) in 1990 attempted to correct some disparities, but parents with disabilities still have their children removed from their homes at disproportionate rates.

Here are a few Facts About Disability Rights for Parents, compiled by the National Council on Disability and the Christopher and Dana Reeve Foundation:

  • In the United States, 4.1 million parents have disabilities.
  • 1 in 10 children have a parent with a disability.
  • 5.6 million Americans live with paralysis from stroke, multiple sclerosis, spinal cord injury, traumatic brain injury, neurofibromatosis, cerebral palsy, post-polio syndrome or other issues.
  • 35 states include disability as grounds for termination of parental rights.
  • Two-thirds of dependency statutes allow courts to determine a parent unfit, based on disability.
  • In every state, disability of the parent can be included in determining the best interest of the child.
  • The District of Columbia, Georgia, Kansas, Maryland, Mississippi, North Dakota, New Mexico, Ohio, Oklahoma, and South Carolina allow physical disability as the sole grounds for terminating parental rights, without evidence of abuse or neglect.

The ADA prohibits discrimination based on disability

The ADA makes it unlawful to discriminate against individuals with disabilities in all areas of public life, including jobs, schools and transportation. The federal law, which is upheld by the Office for Civil Rights, covers all public and private places that are open to the general public. Under the ADA, people with disabilities have the right to equitable access. Equity doesn’t mean equal: It means that accommodations are provided to ensure access to something that everyone else has access to.

In 2008, the Americans with Disabilities Act Amendments Act (ADAAA) was signed into law. The ADAAA made significant changes to the definition of disability. The ADA is organized in sections called “Titles,” and the ADAAA changes applied to three Titles of the ADA:

  • Title I: Covers employment practices of private employers with 15 or more employees, state and local governments, employment agencies, labor unions, agents of the employer and joint management labor committees
  • Title II: Covers programs and activities of state and local government entities, including child welfare agencies and court systems
  • Title III: Covers private entities that are considered places of public accommodation

Equitable parenting opportunities are a Civil Right

Title II of the ADA and Section 504 of the Rehabilitation Act of 1973 protect parents and prospective parents with disabilities from unlawful discrimination in the administration of child welfare programs, activities, and services. Section 504 also protects students with disabilities, and PAVE has an article about that.

The goal of the ADA and Section 504 as it applies to parents and prospective parents is to ensure equitable access to parenting opportunities.  Also, these Civil Rights laws recognize that separation of parents from their children can result in long-term negative outcomes. The ADA requires child welfare agencies to:

  • Give a fair chance to parents with disabilities so they can take part in programs, services, or activities. 
  • Provide help to make sure people with disabilities understand what is being said or done.
  • Prevent barriers that make programs, activities or services hard to access because of disability.

Title II of the ADA and Section 504 also protect “companions”—people who help individuals involved in the child welfare system. A companion may include any family member, friend, or associate of the person who is seeking or receives child welfare services. For example, if a helper person is deaf, the child welfare agency provides appropriate auxiliary aids and services to ensure effective communication.

Discrimination leads to family separation

According to a comprehensive 2012 report from the National Council on Disability (NCD), parents with disabilities are often inappropriately referred to child welfare services. Once involved, these agencies permanently separate families impacted by disability at disproportionately high rates.

According to the report, discrimination most commonly involves parents with intellectual and psychiatric disabilities. Parents who are blind or deaf also report significant discrimination in the custody process, as do parents with other physical disabilities. Individuals with disabilities seeking to become foster or adoptive parents encounter bias and barriers to foster care and adoption placements. The NCD linked the discrimination to stereotypes and speculation about parenting ability rather than evidence of problems in the home. The agency found a lack of individualized assessments and that many families weren’t receiving needed services.

The ADA and Section 504 provide Civil Rights protections against retaliation or coercion for anyone who exercises anti-discrimination rights. ADA complaints can be filed online, by mail, or by fax.

To file an ADA complaint online:

Americans with Disabilities Act Discrimination Online Complaint Form | (en Español)
Instructions for submitting attachments are on the form.

To file an ADA complaint by mail, send the completed ADA complaint form to:

US Department of Justice 
950 Pennsylvania Avenue, NW
Civil Rights Division 
Disability Rights Section – 1425 NYAV
Washington, D.C. 20530

To file an ADA complaint by facsimile, fax the completed ADA complaint form to: (202) 307-1197

Individuals also may file complaints with the Office for Civil Rights at the Department of Health and Human Services (HHS). For instructions to file in English or other languages, go to How to File a Civil Rights Complaint.

Always save a copy of the complaint and all original documents.

For more information about the ADA and Section 504, call the Department of Justice ADA information line: 800-514-0301 or 800-514-0383 (TDD), or access the ADA website.

Visit the following websites for additional information:

Parenting with a Disability: Know Your Rights Toolkit

Protection from Discrimination in Child Welfare Activities

Children’s Bureau – An Office of the Administration for Children and Families

Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children

Parental Disability and Child Welfare in the Native American Community

Protecting the Rights of Parents and Prospective Parents with Disabilities