future planning Archives

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

Posted on January 24, 2024February 16, 2024 by Nicol Walsh

Overview:

Planning for your child’s future will involve different tasks at different stages in your child’s life. This article covers what you will need from age 13 through adulthood. Part 1 covers the years from ages Birth through 12.
This article has information on:
Legal and informative documents parents may want to create or update at key stages in their child’s life (will, powers of attorney, letter of intent)
Financial planning, including options which do not affect your child’s benefits.
Supporting and protecting your minor child after your death or when you are unable to care for them.
There are many legal and financial terms in this document. This glossary of definitions is helpful.

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

Posted on January 24, 2024January 26, 2024 by Nicol Walsh

Overview:

Planning for your child’s future will involve different tasks at different stages in your child’s life. This article covers what you will need from ages Birth to 12. Part 2 covers the years from age 13 through adulthood.
This article has information on:
- Legal and informative documents parents may want to create (wills, powers of attorney, letter of intent)
- Financial planning, including options which do not affect your child’s benefits.
- Supporting and protecting your minor child after your death or when you are unable to care for them.

Full Article

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.

Wills:

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

Legal Resources for Highly Mobile Military Families

Posted on April 19, 2021April 19, 2021 by Barb Koumjian

Military families have unique circumstances that can call for out-of-state or specialized assistance. For example, when they move to a new duty station, they may need to find a lawyer in the state to which they are moving to help them establish a new guardianship for an adult child with disabilities. Fortunately there is an online resource from the American Bar Association: ABA Home Front, created to help military families get legal assistance both on and off the installation.

ABA Home Front helps users locate and contact free, low-cost, and standard fee-for-service lawyers by state. Each listing shows the type of law practiced. Example: “Landlord-Tenant Law, Family Law, Wills”. There’s a search engine to find a fee-for-services lawyer by legal topic. Many states also include contact information for the Judge Advocate General (JAG) offices at that State’s military installations.

Some States have more robust listings than others. California, for example, which has large military-connected populations, has several county and city legal programs with a focus on specific military issues, including veteran’s issues. However, every State page gives a family the opportunity to search for a program or a lawyer that will work for their situation.

Families (both military and civilian) can visit another ABA page to find a State Bar Association, and use a search function to locate a lawyer for a specific purpose. If, for example, an active-duty family wanted to plan support for an adult child with a disability, they could use terms like “military”, “disability”, “estate planning”, and “guardianship”.

If a family has no internet access, most telephone directories will have a phone listing for a local or State Bar Association that can give information on which lawyers specialize in their area of need.

Families still have to check out the program or lawyers they locate, and select the lawyer based on their own needs, financial situation and whether they believe a lawyer is right for them. ABA Home Front has a section called “Working with a Lawyer” which is a great place to start. The page gives answers to essential questions like:

What exactly is a lawyer?
What are the professional requirements to become a lawyer?
What about lawyers who work with military families? Do they need to have any special training?
Are there specific cases when I should see a lawyer?
Should I save money and wait until I absolutely need a lawyer’s services?

When a family is ready to look for a lawyer, your Parent Center may be able to refer them to a specific practice. Sometimes, when the search needs to go out-of-state (a lawyer that does Special Needs Trusts, for example) you may need a few more suggestions for organizations or search tools that can help:

Other National Legal Resources

The ARC of the United States is an organization for people with intellectual and developmental disabilities which has state and sometimes county- level chapters. They are known for referring families to lawyers with appropriate experience in the disability legal field. The national website has the online Center for Future Planning which encourages families to search for professionals such as lawyers and financial planners.

Disability issues: the Council of Parent Attorneys and Advocates (COPAA) has a web page to search for member attorneys. The site also gives guidelines for choosing a lawyer or advocate.

Disability Rights Education and Defense Fund (DREDF): civil rights legal action and public policy organization which operates one of California’s Parent Centers. For families interested in the legislative or civil rights aspects of their legal concerns, or who need Parent Center services in Alameda, Contra Costa, or San Joaquin counties.

Family Network on Disabilities (FND) is a national network organization which operates three Parent Training and Information Centers in Florida. They also offer a Special Needs Trust Administration which provides comprehensive trustee services nationally. They don’t prepare trust documents but are available to review any documents prepared by a family’s attorney (fees apply).

The Military Families Learning Network connects military family service providers and Cooperative Extension professionals on topics focused on the needs of military families. Many of the webinars are also suitable for families. A good basic look at future planning is in their webinar, Estate Planning for Families ith Special Needs on YouTube.

Wrightslaw Special Education Law and Advocacy offers the Yellow Pages for Kids website, a search tool to find “educational consultants, psychologists, diagnosticians, health care specialists, academic tutors, speech language therapists, advocates, and attorneys.”

Map Your Future with Person-Centered Planning

Posted on April 10, 2020August 3, 2023 by Nicol Walsh

A Brief Overview 

Person-Centered Planning (PCP) is a method for helping a person map out a future with intention and support.
Read on for more information about what Person-Centered Planning is like.

Full Article 

Everyone dreams about what they might do or become. Individuals with disabilities might need additional support to design the plans, set the goals and recruit help. The Person-Centered Planning (PCP) process is a tool that works like a Global Positioning System (GPS) to help a person figure out where they are starting and how to navigate to a planned destination.

A PCP session is a gathering that can happen in a specific physical location, such as a school or a community center, or in a virtual space online. The people who get together might include family members, friends, teachers, vocational specialists, coaches—anyone who might help brainstorm ways to plan an enriched, full life for a person of honor.

The first step is to celebrate the gifts, talents, and dreams of the person. Then the group develops action steps to help that person move closer to their dreams and goals.

Throughout the gathering, the attendees listen, ask questions, and draw pictures or write down words that contribute to the process. Respect for the person’s goals and wishes is a priority, and participants withhold judgment to honor the individual completely.

Person-Centered Planning explores all areas of a person’s life. All people experience various times in their lives that are transitions. High-school graduation is a major example. Job changes, moving to a new home, entering or leaving a relationship: Those transitions happen for individuals with and without disabilities.

Individuals with disabilities have some additional transitions. For example, when a person leaves the special education system of public education at graduation or after age 21, there is a change in disability protections. A student receiving special education is protected by the Individuals with Disabilities Education Act (IDEA). In adult life, the right to accommodations and non-discrimination is protected solely by the Rehabilitation Act of 1973 (Section 504) and the Americans with Disabilities Act (ADA).

There are specific transitions that occur for individuals who qualify for support from the Developmental Disabilities Administration (DDA), which in Washington is part of the Department of Social and Health Services (DSHS). Employment and workforce training programs often are part of the transition from high school into what happens next.

During major life transitions, many service agencies focus on a person’s inabilities or deficits. Person-Centered Planning, on the other hand, focuses on what’s positive and possible, based on the dreams and goals of the individual.

A PCP session includes a set of maps where information is collected in words and pictures. Here are some examples:

People in my Life

This map names important people and their roles in concentric circles. These are people that the individual trusts for help and support and may include paid and unpaid supporters. Those who are closest to the person are in the circles closest to the center of the map.

Who am I? My Story, My History

This map is built during the session to describe the person’s story from birth up until the gathering. This map reflects what is most important to the individual. The facilitator might ask:

What parts of your life are important for people to know?
What are some stories of your life that would be helpful for a coworker or a friend to know?
Are you a sibling? A spouse? A parent?
How old are you?
What activities do you participate in?
Have you had any jobs?
Where do you live? Go to school?
Do you have a medical concern that someone spending time with you might need to know about?

Likes and Dislikes

The “Likes” list includes favorites, things that make the person happy. Favorite colors, foods, activities, places, people are listed.

The “Dislikes” list includes the opposite of all those things and might also list triggers (bright lights, loud noises, angry voices, bullies) or other sensitivities.

What Works/ Doesn’t work

The first part of this map asks: When learning a new activity or skill, what are steps and learning tools or activities that work for you? Answers might look like these examples: frequent breaks, accommodations, a written schedule, a list of duties, instructions in larger print, a preferred time of day to start something….

The second part asks: When learning a new activity or skill what activities do not work for you? Answers might resemble these examples: waiting in line, too many instructions, too many people barking out orders, standing or sitting for too long, verbal instructions, unclear expectations….

Gifts, Talents and Strengths

This map asks several questions:

What are you good at?
What can you do that is easy for you?
What are your best qualities?
What do people like about you?

Examples for answers: best smile, cleaning, giving, caring, natural dancer, very social, great with computers, good with numbers, great at sports, good listener, good with animals, etc.

Dreams /Nightmares

The My Dreams map asks: Where you would like to see yourself in a few years? Follow-up questions:

What will you be doing?
What would your dream job be?
Where are you living?
Do you live on your own or with family or a roommate?
How are you keeping in touch with your friends?
What is an action you can take to move toward your dream or goals?

The Nightmare Map asks: What do you want to avoid? Follow-up questions might include this one: Where do you not want to be in a few years? This is not to make the person feel bad but to make an out-loud statement about what the person doesn’t want to happen. This can include actions or thoughts that someone wants to avoid.

Needs

The Needs map asks: What do you need help with to avoid the nightmare? A follow up question might include: What areas do you need support with? Answers might look like these examples: budgeting money, learning to drive, training to ride the bus, cooking lessons, looking for a job. The goal is to recruit support to help the person stay away from the nightmare and work toward the dream.

Action Steps

A map that show Action Steps includes the specific help that will assist the individual in moving toward the dream. This chart typically details what needs to be done, who will do it, and by when.

Example:

Goal: To Write a Resume
Who: Michele
What: Call Mark to ask for help.
By When: Next Monday, April 6, 2020

This process involves many support people in the person’s life and identifies, in a self-directed way, areas where help is needed to meet personal goals. The gathering involves the important people in someone’s life because they can help through the process and step up to offer support for the action steps.

How to get a Person-Centered Plan

Here are places that might help you find a PCP facilitator in your area:

Developmental Disabilities Administration (DDA)
Division of Vocational Rehabilitation (DVR)
School District

Here are a few additional places to seek information about Person-Centered Planning:

Inclusion.com: All My Life’s a Circle

Inclusion.com: The Path Method

Video from PAVE, Tools 4 Success

Informing Families.org