What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 2: Age 13 through Adulthood


Full Article

Thinking about the future when you will no longer be available to help your child because of death or a condition where you cannot participate in their care can be emotionally difficult. On top of that, this planning process is full of important decisions with significant impacts on your child’s future. To prevent being overwhelmed, it may help to review the entire article, and then tackle the tasks and steps needed to create a plan.

When your child is between age 12 and age 18

Review all the basic legal and financial arrangements you have already made. What needs to be changed? Are the guardians, financial managers, powers of attorney agents and trustees still ready and able to take on those responsibilities? If not, make an appointment with your attorney to change the terms of, or create your will, powers of attorney, and Special Needs Trust. You may also wish to begin an ABLE account for your child’s benefit. Information about these arrangements is available in PAVE’s article, What Will Happen When We’re Gone? Planning for the Future of Your Child with Disabilities PART 1 Ages Birth to 12.

Does your child aged 13 or older have a Health Care Transition Plan?

Does your child have a person-centered plan that includes their own future desires and the people they want to be in their lives?  If so, it’s a good idea to consult the plan when considering your legal and financial documents, and your Letter of Intent.

If your child does not yet have a person-centered plan (PCP), you can suggest it and encourage and support them to create one.

A Person-Centered Plan is an individual’s plan for their future-their wishes about what they want to do with their life. What current and future living arrangement do they want? Do they want to work, and if so in what field? Do they want more education or training after high school? What about personal relationships—dating, partnering/marrying, general social life? A PCP explores all areas of a person’s life. It’s flexible and updateable. If an individual with disabilities needs some assistance to develop the plan, they can select the people to give them that help and support.

PAVE has resources about the process of creating a PCP:

Other typical future planning in this time period:

When your child is an Adult (age 18 in Washington State)

Legal documents to create or update:

A will. Your child is no longer a minor, so you do not need to identify a guardian for them. If your child receives government benefits (SSI/SSDI, Medicaid) you will want to make sure your child’s inheritance does not go directly to them when you die, but is distributed to a Special Needs Trust or ABLE account.

Power of Attorney: Because your child is now a legal adult, you cannot make decisions for them any longer and you will not need a Power of Attorney to make decisions on their behalf.

Letter of Intent: Create it or update it to support your adult child’s life plans as described in their person-centered plan. It’s not a legal document, but you can keep copies of it with your will to show that your wishes support your child’s ability to make decisions about their life (depending on their level of disability).

Depending on your child’s disability, they may be able to work, live independently and manage their own finances and health care, possibly with various levels of support. On the other hand, most parents want to protect their child from making decisions on their finances, housing, employment, etc., which may not turn out well because of the child’s inexperience or level of disability.

There are several legal options for an adult child to be provided support in decisions about their lives and in their day-to-day living. Some are very restrictive of a person’s rights to make decisions about where they will live, whether they have a say in how their money is spent, employment, education and even their own health care.

The least restrictive option is Supported Decision-Making (SDM). It’s a legal 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. This is a fairly new legal option as Washington added this option to the Uniform Guardianship, Conservatorship and Other Protective Arrangements Act in 2020. There may be a small fee to have the signatures on the document notarized. It does not have to be filed with the court, but copies should be provided to health care providers and the originals should be kept safely.

If your adult child has a person-centered plan, it can help with identifying supporters in the SDM agreement—and vice versa!

PAVE has a resource about this option, which includes links to other resources and supports to help parents and adult children understand how this option works: Supported Decision Making is an Option for Adults with Disabilities. The list of options below is from that article.

Another option is Conservatorship of an Adult, in which a court-appointed person makes property and/or financial decisions for the adult with disabilities. Like guardianship below, the petition may be denied if less restrictive options are not tried first.

Lastly, there is Guardianship of an Adult, in which a court-appointed person makes decisions for the adult with disabilities. Guardianship may be combined with Conservatorship. Guardianship is the most restrictive option and may not be granted unless there is evidence that less restrictive alternatives are unworkable.

Washington Law Help has more information on Guardianship of an Adult and other protective arrangements.

Informed Consent: This is a limited option for supporting medical decisions when a healthcare 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 (in this case, your adult child) can sign a legal document to give someone else power to make decisions on 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.

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-appointed 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 at 1-877-734-6377 or Report Online.

Adult dependent children and family members of military may continue to receive military benefits, including access to installation facilities (like medical services, recreational programs, and family supports) once they’ve aged out of dependent status under Secondary Dependency. To qualify, the individual must be:

  • A qualifying family member, including an adult child with a disability
  • Unmarried
  • Unable to support themselves due to a mental or physical disability that began before age 21, or age 23 if they are a full-time student
  • Receive more than 50% of their living expenses or financial support from the servicemember

Establishing secondary dependency includes an application process through the servicemember’s branch of service and a disability determination. For more information, contact the Exceptional Family Member Program (EFMP) closest to you or register for the STOMP (Specialized Training of Military Parents) Workshop, “Pathways to Military Medical and Medicaid Benefits for Exceptional Family Members”.

For more information on wills, powers of attorney, Special Needs Trusts and ABLE accounts, see What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities Part 1: Ages Birth to 12.

Additional Resources

What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 1: Ages Birth to 12


Full Article

Thinking about the future when you will no longer be available to help your child because of death or a condition where you cannot participate in their care can be emotionally difficult. On top of that, this planning process is full of important decisions with significant impacts on your child’s future. To prevent being overwhelmed, it may help to review the entire article, and then tackle the tasks and steps needed to create a plan.

Legal Planning. You will need:

  • A will:If you die and either don’t have a will or don’t specify a guardian in your will, the courts will appoint someone, and it won’t necessarily be a family member. It could be a complete stranger. A will usually includes almost all your instructions for how you want your child to be cared for when you die.
  • A Letter of intent: It expresses your wishes for your child which are not included in the will. It has no legal standing, but acts as a guide for guardians, Power of Attorney agents, and trustees.  It can be provided to your selected guardians and a copy can be saved with the lawyers who helped you set up your will and Powers of Attorney.
  • Powers of Attorney (POAs): Create agents, people who can legally act on behalf of your child for financial, health care and other life areas. They are selected by you, for after your death or when you are temporarily or permanently not capable of caring for your child. These agents do not have to be the same people you select as guardians. These are legal documents best prepared with the help of a lawyer and must be notarized.


Who will be your minor child’s guardian? What will they need to know about your child?
How will your child be financially supported while a minor? It’s recommended that parents select someone different than the guardians to manage their child’s finances. Think about close friends as well as your parents or siblings. If your child is older, think about adults with whom your child has a bond. This can help if you want your child to continue in their current school, job, or neighborhood.
List each child individually when naming a guardian, and list all your minor children. Probate courts will not assume you want the same guardian for all your children unless you list them that way and might appoint a separate guardian for unlisted children!

            For ex: “I/We name Harold and Maude Green as guardians for our minor children Georgia Brown, Michael Brown, and Theodore Brown”.

Important: Do not directly leave your child with disabilities any money or assets in your will. Instead, have that child’s share of their inheritance pass to a Special Needs Trust and/or ABLE Account (as described below). Note that in this situation, it’s good to have a lawyer draw up the will to make sure that the inheritance does not impact your child’s current or future benefits, such as Social Security programs or Medicaid.

Financial Planning

Government Benefits: For the present time, and for your child’s future

Supplemental Security Income (SSI) for your child at any age. The SSI program makes cash assistance payments to aged, blind, and disabled persons (including children) who have limited income and resources. Many states pay a supplemental benefit to persons in addition to their Federal benefits.

People who qualify for SSI may, in some states, qualify for Medicaid health insurance, which is either free or low-cost.

Social Security Disability Insurance (SSDI) program for disabled and blind persons. The amount of the benefit is based on your child’s contributions to Social Security OR based on the parents’ earnings. Your child must meet Social Security criteria for disability.

Social Security Administration provides a useful comparison chart on important differences between the two programs on their Red Book page.

Payments from either program are often not enough to pay for everything your child may need or want, and any money or assets in your child’s name may cause their Social Security benefits, Medicaid coverage, and other benefit programs (supported housing, SNAP /food stamps, etc.) to be cut back or eliminated.

Funding your child’s future directly

Special Needs Trusts and ABLE accounts are ways to provide for your child financially that do not reduce their government benefits. They differ in many ways, with their own pros and cons. You might wish to have both an SNT and an ABLE account based on your family’s circumstances.

An ABLE account is a tax-advantaged savings account that can fund disability expenses. Currently, the beneficiary of the account (the person with a disability) must have acquired the disability before age 26, and this age limit will increase to before age 46 on January 1, 2026. The beneficiary of the account owns the funds. Interest (income) earned by the funds will not be taxed. Anyone can contribute to the account (the individual with disabilities, their family members, friends, or a Special Needs Trust).

The funds in the ABLE account are generally NOT COUNTED as income or assets against an individual’s eligibility for SSI, Medicaid, and other programs with income and asset limits, such as federal student aid, HUD housing programs, and SNAP (food stamp) benefits.

Money from an ABLE account may be used for disability-related expenses to supplement benefits through private insurance, Medicaid, SSI, employment, and other resources. The ABLE National Resource Center gives specifics on ABLE accounts on their website.

Special Needs Trust (SNT): A trust is a legal “tool” for managing funds, and Special Needs Trusts are set up so that the beneficiary of the trust, in this case your child with disabilities, can have the funds used on their behalf. Money in the SNT is not counted against income limits for government benefit programs. You can arrange for the Special Needs Trust to be the beneficiary for life insurance policies and retirement plans. You can let friends and relatives know that they can give or leave money/assets to your child through the trust.

Government benefits will cover most of the basic needs while monies from the trust can pay for your child’s wants. Only a qualified attorney should set up the trust. If it is done incorrectly, your child’s benefits could be at risk.

There are several types of SNTs. The one most commonly set up by parents or guardians for a child is called a third-party special needs trust, which means that the funds in the trust are from someone other than the child. Military parents may designate Survivor Benefit Plan payments to an adult dependent child with disabilities, but only through a first party trust.

NOTE: Unlike ABLE accounts, which were set up according to federal law, there is no “official” source of information on Special Needs Trusts. Many elder and disability law practices will have information on their websites about SNTs. Additional information from disability organizations can be found at:

ARC of the United States: Type “Special Needs Trust” in the search bar to find a large number of articles on the topic, not only for individuals with developmental disabilities.

Military OneSource: Type “Special Needs Trust” into the search bar for military-specific information on SNTs.

It’s important to know that a professional should help you create the SNT. Consult with an attorney with expertise in elder and disability law. When naming trustees, it’s important to not only name yourselves, but to name backup (“secondary”) trustees to cover situations when you are not able to act as trustees. Setting up secondary trustees is separate from setting up agents using a Power of Attorney (POA). The authority of an agent under a POA may not be accepted by the financial or legal organization where the trust funds are held. You may choose to use the same individuals you selected for your financial POA, or different people.

Special Needs Alliance “is a national alliance of attorneys for special needs planning.”  They have a directory of attorneys which currently lists two attorneys in Washington State who are members of that organization.

You can search for attorneys with SNT experience through the American Bar Association.

Legal work can be expensive! Here are some resources to seek out free or low-cost help and referrals:

  • WashingtonLawHelp.org: This website has articles on topics about future planning, such as wills, guardianship of children and adults, alternatives to guardianship, Powers of Attorney, and information for non-parents raising children along with many others
  • CLEAR intake hotline: “CLEAR is the statewide intake line for free and low-cost civil legal aid in Washington. Call 1 (888) 201-1014 or use the online intake form on the website. Seniors (people age 60 and over) can access intake by calling CLEAR*Sr at 1 (888) 387-7111. Veterans may dial 1 (855) 657-8387”.
  • ABA Home Front: If you are military, and you do not wish to use your Judge Attorney General (JAG) or they do not have experience with Special Needs Trusts or other future planning when your child has a disability, the American Bar Association has several programs, including free or low-cost options, to locate an attorney or program with a focus on military families. Veterans can get free legal answers on this website, too!

For information on future planning steps in your child’s teen years and through adulthood, see PAVE’s article: What Will Happen When We’re Gone? Planning for the Future for Your Child with Disabilities, Part 2: Age 13 through Adulthood

Temporary Caregivers of Military Children: Guide to Essential Information

If you are a grandparent, other relative, or family friend taking care of children while their parent or parents are deployed or on other duty, this guide to essential information is intended to offer you help and resources.  It contains useful information about military benefits that provide help with schools, medical care and supports and services for disabilities (sometimes called “special needs”). Medical care, supports and services include benefits for what some people call “invisible disabilities” such as ADHD, developmental disabilities including autism, learning difficulties, and mental health disorders. It also includes information on legal and financial assistance through the military and through civilian programs.

 Top Two Essential Documents:

 These two documents are necessary for you to act on behalf of the child in situations where a parent would usually act, such as giving permission for medical care or picking up a prescription, enrolling a child in school or daycare, and making decisions when the child’s parent cannot be in contact.

 Whether you live near or far away from the family’s current installation, you will need:

  1. Military ID cards: each child age 10 or older needs to be registered in the Defense Enrollment Eligibility Reporting System and have a current ID card. Caregivers do not get their own ID cards and will need the child’s ID for installation access, medical benefits, and military-subsidized childcare.
  2. Power of Attorney: a document giving an individual legal authority to act in certain situations on behalf of another individual. In these cases, the service member is giving a temporary authority to the designated relative or other caregiver (you) to care for their child.
    1. How a service member can get and send a Power of Attorney if they have already left for deployment (note-this is a blog post written by a military spouse, not an “official” document—but it has clear directions.)

Documents to get onto the installation:

If you live nearby, you may need to get onto the installation for a child’s school, medical care, child care, military-subsidized shopping, recreational programs, religious services, visits with friends, etc.

  • The child’s military ID (needed for age 10 and above)
  • Acceptable picture ID for you (contact Visitor Information at the installation for what is accepted)
  • Power of Attorney giving you authorization to make decisions on behalf of the child in the absence of his or her parents (school, medical, child care, other situations requiring parental authority)
  • Agent letter of authorization signed by the installation’s commanding officer. The military parent or parents can request this letter through the ID card office at their installation.

What other documents might I need?

Documents for a Deployed Service Member’s Designated Family Caregiver

Resources specifically for grandparents and other kinship caregivers and guardians:

Military and Civilian Resources for Temporary Caregivers:


  • Parent Centers in each state work with families of infants, toddlers, children, and youth with disabilities age birth to 26 and help parents and other caregivers participate effectively in their child’s education and development.


  • Child Care Aware of America (to locate military-subsidized and civilian child care)
  • Call 2-1-1 to find out about local affordable child care options
  • YMCA (some YMCAs have special arrangements for military children)
  • Before-and-after school programs through the local school district
  • Administration for Children and Families (US Dept. of Health and Human Services) child care programs that use federal money to offer lower-cost child care (Head Start is one such program)
  • State programs

Medical (including Autism Services and Respite Care)

Financial Help with Living Expenses