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.

Tips to Organize Your Child’s Medical and School Documents

Care planning and a well-organized system to keep track of important documents can save time and create comfort during uncertain times. This article provides some tips for building a “care notebook,” which might be a three-ring binder, an accordion file, or a portable file box—whatever makes sense for your organizational style and the types of materials you need to sort.

A portable Care Notebook can include the most current versions of medical or school documents, while older files can be archived separately. Here are some examples of formal documents you might organize:

  • Medical paperwork: diagnoses, assessments, surgeries, medications, provider contacts
  • School paperwork:  Individualized Education Program (IEP), Section 504 Plan, assessments, meeting notifications, progress notes, correspondence, telephone logs
  • Personal care notes: hygiene routines and concerns, food preferences and issues, sleep schedules and challenges
  • Community access: transportation needs, hobbies, clubs, activities

Consider what else to include, such as business cards and contacts, a call log, a calendar, emergency/crisis instructions, prescription information, history, school schedule…

Each primary category can be a section of a large notebook or its own notebook. Consider how portable the notebook needs to be and where you might take it or share it. Will the size and shape be practical for where you plan to go? Do you need more than one notebook or system?

Keep emergency information handy and easy to clean

A small “on the go” handout might be helpful for critical care appointments or emergencies. A laminated handout or a page tucked into a protective sleeve will be easier than a large notebook to disinfect after being in public. Depending on a child’s needs, caregivers might create multiple copies or versions of an on-the-go handout for easy sharing with daycare providers, school staff, babysitters, the emergency room, camp counselors or others who support children.

Key information for a quick look could include:

  • medications and dosages
  • doctors and contact information
  • emergency contacts—and whom to call first
  • allergy information
  • preferred calming measures

Plan for a caregiver’s illness

Another pull-out page or small notebook might include specific instructions about what to do if a caregiver gets sick. These questions could be addressed:

  • Who is the next designated caregiver?
  • Where can the child live?
  • What are specific daily care needs and medical care plans?
  • Is there a guardianship or a medical power of attorney?
  • Are there any financial or long-term plans that need sharing?

Step-by-Step Instructions

Building a Care Notebook does not have to be daunting. Most people start small and try different approaches until they find the best fit.  Here are a few ideas to start the process:

  • Choose a holding system that makes sense for your organizational style: notebook, accordion file, small file box, or a primarily digital system with limited “to-go” handouts.
  • Identify and label the document sections by choosing tools that fit your system: dividers, clear plastic document protectors, written or picture tabs, color coding, card holders for professional contacts, a hierarchy of folders on your computer…
  • Include an easy-to-access calendar section for tracking appointments.
  • Include a call log, where names are recorded (take time to spell full names correctly!) and phone numbers of professionals. Take notes to create a written record of a conversation. It is also practical to send a “reflective email” to clarify information shared in a call, then print the email, and tape it into the call log to create a more formal written record of the call.
  • A separate sheet of easy-reference information can be used to share with a caregiver in a new situation, such as daycare, doctor, camp, or a sleepover. Mommies of Miracles has an All About Me template that serves this purpose.
  • When appropriate, invite the child to participate.
  • Use technology: Dr. Hempel Digital Network provides 10 health-record applications with four options that combine electronic medical records with telehealth capabilities. Other applications work with cellular phones. Here are three: MTBC PHR, Medical Records, and Medfusion Plus.

Tools to help you begin

Quick and easy forms can help you start. Here are two options:

  1. Portable Medical Summary from Seattle Children’s Hospital
  2. What’s the Plan from the Washington Department of Health

Guidance to help you build a more comprehensive care notebook is available from Family Voices of Washington. Printable forms can be done in stages and updated as needed to slide into a notebook or filing system. The templates include pull-out pages for Emergency Room or Urgent Care visits and forms to help organize medical appointments.

A child’s medical providers might help write a care plan and can provide specific contact information, medication lists and emergency contact procedures for each office. A school can provide copies of an Individualized Education Program (IEP), a Section 504 Plan, an Emergency Response Protocol, a Behavior Intervention Plan or other documents. If a child is in state-supported daycare (on location or in-home), staff can provide forms for emergency procedures and contacts.

You will thank yourself in the future!

Having information organized and ready can make it easier to apply for public services through the Social Security Administration, the Developmental Disabilities Administration (DDA), the Division of Vocational Rehabilitation (DVR) or others. For military families, a Care Notebook can make transitions and frequent moves easier to manage.

A well-established organization system also can help a child transition toward adult life. Easy access to a list of accommodations can ease that first meeting with a college special services office or provide a key set of documents for requesting employment supports through DVR. Easy access to key medical records can be the first step to helping a child learn what medications they are taking and advocate for an adjustment with an adult provider

Additional resources for long-term planning include: