If your child is almost 18, it’s time to think about what kind of support they’ll need for decision-making as an adult. Most adults with disabilities can make their own decisions, but those with intellectual disabilities may need varying levels of support to make safe and reasonable decisions as they go through life. While you may have heard of guardianship, there are several alternatives to guardianship that you may not know about.
When your child turns 18, you no longer have the right to make decisions for them unless you go through a process to get legal permission. There are a few ways to do this. Full guardianship is the most restrictive option: it’s only for people who can’t make any of their own decisions, even with support. It takes away a person’s right to make their own decisions and gives this right to the guardian.
While we all want to make sure our children make safe decisions, we also must try to preserve as much of their independence as possible. Even if you decide to pursue guardianship, you can set it up to allow your child to make certain kinds of decisions for themselves. This is called limited guardianship.
And there are many less restrictive alternatives to guardianship that can maintain as much independence as your child is capable of. When your child is 16-17, it’s time to start exploring their ability to make their own decisions, and think about the best options to help them with decision-making when they turn 18.
If your child will clearly need someone to make some or all kinds of decisions, read about the process of getting guardianship. Otherwise, read on to learn about alternatives to guardianship.
What kinds of decisions should you think about?
There are many different kinds of decisions that adults must make. These are the kinds of decisions that you as a parent will not be able to make for your child after they turn 18, unless you get legal permission:
|Parents will not be able to:|
|Money||Manage bank accountsAuthorize a credit card|
|Education||Decide on special education services (sign the IEP)Decide if your child should stay in school until age 22|
|Healthcare||See your child’s medical recordsMake decisions about medical care and treatmentGive permission for procedures, even in an emergencyTalk with insurance companies about your child’s coverage|
|Housing||Decide where your child will liveDecide who they will live withSign a leaseApply for Section 8 housing or other benefits|
Here’s what you can do to decide on the best option:
- First, talk to your adult child, and think about these kinds of decisions. (We say “talk”, but use whatever communication method your child uses.) Ask which ones they feel ready to make themselves and which they’ll need help with. Talk about how they might learn what they need to know to make different kinds of decisions.
- Talk to others who know your child, like friends, teachers, therapists, other IEP team members, and case managers at social service agencies for adults with disabilities. Get their advice on what kinds of decisions your child can make in the context of their work with your child.
- If you’re considering legal options like guardianship or Durable Power of Attorney, talk to a lawyer to learn more and get help deciding
Think about how support for your child’s decision-making will affect these goals:
- Helping them get the most out of life, including further education, potential work opportunities, community engagement, and pursuing their interests
- Maintaining their sense of independence
- Encouraging them to learn new skills, including how to make decisions about planning their life
- Keeping them safe and protecting them from scammers
We want to protect our kids from making decisions that are not in their best interest. But this can be a slippery slope: is it for us to decide what’s in their best interest? Many adults with intellectual disabilities have a guardian who makes all decisions, even if the person could make some of these safely on their own. This situation can limit the person’s growth in learning how to direct their own activities, and rob them of their sense of having some control over their life.
You may be worried that your child might make choices that you think are poor decisions for them. For example, living with roommates who are selling drugs, taking a job that you feel is exploiting them, refusing medical treatment, or choosing to be sexually active. It can be scary to let go of control, and some decisions may truly be dangerous. But others may actually be safe, especially with ongoing support and education. As a parent who cares about your child, it’s your task to tease out which is which. You can make arrangements–through limited guardianship or the alternatives below–where you have control of some decisions, but not others.
Less restrictive alternatives to guardianship
These options will let your adult child keep as much of their independence as possible. The best option (or combination of options) will depend on their abilities and situation.
- Supported Decision-Making (SDM)
- Durable Power of Attorney
- Health Care Proxy
- Other permissions for medical records, education and insurance
1. Self-advocacy: Helping your child learn to make their own decisions:
Self-advocacy is when someone can speak for themself and make their own choices.
If your child is likely to be able to make their own decisions after they turn 18, this is the least restrictive option. This means they can keep all their independence in making decisions. But they may need some help learning how to make decisions.
You can work with your child to help them learn about decision-making, but you can also get help from local self-advocacy groups. Many local organizations offer programs to help people with disabilities learn how to make good decisions and manage their lives with as much independence as they can.
Organizations that may offer self-advocacy training for people with disabilities:
- The Arc – Find your local chapter
- Autistic Self-Advocacy Network
- National Alliance on Mental Illness (NAMI) – Resources for young adults
- Your state’s Parent Training and Information Center (PTIC), or Agency for Disability Services or Disability Rights Center.
Louisiana organizations that may offer self-advocacy support to people with disabilities:
- People First of Louisiana
- The Arc of Louisiana: Find your local chapter here
- Down Syndrome Association of Baton Rouge
- Down Syndrome Association of New Orleans
- Easter Seals Louisiana
- National Alliance on Mental Illness – Louisiana (NAMI Louisiana)
- Self-Advocacy and Self-Determination resources (From the Louisiana Parent Training and Information Center – LAPTIC)
Massachusetts organizations that offer self-advocacy support to people with disabilities:
- The Arc of Massachusetts: Find your local chapter
- Easter Seals – Youth Leadership & Mentoring
- Massachusetts Advocates Standing Strong
- Massachusetts Down Syndrome Congress
- Mass Families Organizing For Change
- National Alliance on Mental Illness – Massachusetts (NAMI Mass)
- Partners for Youth with Disabilities- Self-Advocacy Guide
2. Supported Decision-Making (SDM)
SDM is another good alternative to guardianship. It’s a process that allows a person with a disability to make their own decisions with support from a team of people they trust.
You can create a team of supporters who will work with your adult child to make decisions together, and those decisions will be respected. This arrangement maximizes your child’s independence and promotes self-advocacy.
How it works:
- A person with a disability decides where they can use help making decisions (such as education, employment, finances, healthcare, relationships)
- They pick a network or team of supporters – people they trust to help them make those decisions
- This team works together to help them make decisions. The supporters do not make the decision for the other person, and they will respect whatever decision the person makes. The team may meet on a regular basis, or only as needed
- The person and their supporters sign a Supported Decision-Making Agreement
- Read How to Make a Supported Decision-Making Agreement (36 pages)
- Explore Supporteddecisions.org, including their Resource Library
- Watch short movie clips of other people exploring supported decision-making
- Download a sample Supported Decision-Making (SDM) Agreement
3. Durable Power of Attorney (DPA or DPOA)
A Durable Power of Attorney allows your adult child (the “principal”) to appoint an “agent” to help with personal and financial management. This is a less restrictive option than guardianship but is only possible if your child can understand what the DPOA document means. It lets your child keep control of certain parts of their care and finances.
Other benefits of a DPOA: it’s free (or fairly inexpensive), it can be quick to set up, and you don’t have to involve the Court.
The role of the appointed DPOA agent is to help your child in certain specified areas, like finances, adult services, or healthcare.
A Durable POA is generally better than a regular POA for people with disabilities, because it will stay in effect until either person decides to stop it.
Examples of what a DPOA Agent can do:
- Sign a lease
- Apply for–and manage–services from social service agencies for adults with disabilities
- Communicate with insurance agencies and healthcare providers
- Make medical decisions and approve procedures
- Pay bills
- Manage money and bank accounts
How to get a DPOA for your child:
- Find a DPOA form: You can search online for a form from your state, bank, or health center; or ask a social service agency for adults with disabilities. You can write your own, but it helps to have a sample to work from (Example of a DPOA form from Massachusetts)
- Help your child fill out the form: The DPOA should specify which decisions your child gives you the right to make for them. Work with your child to adapt it to their needs (or check off the appropriate boxes). If it’s a complicated case, you may consider hiring a lawyer to help you write a customized DPOA form. Note that your child is the “principal” and you (or another adult) would be the “agent”
- Get the form notarized: Find a notary public and have your child sign the form in front of them
Some banks and insurance companies have their own forms that they want you to use. To avoid problems, ask all the institutions you will be dealing with if they’ll honor your DPOA. If not, ask for their forms and use them.
A DPOA should stay in effect until the person wants to end it. But sometimes institutions don’t want to accept one that was signed years ago. If this happens, you and your child may need to fill out a form stating that the DPOA is still in effect, or sign a new copy of the existing DPOA with a current date.
You (or whoever is the agent) must do the following:
- Act in the best interests of your adult child
- Update your child on their affairs and how you are handling them
- Not misuse your child’s money or property
- Not act beyond the authority your child has given you. The limits of your authority should be clear in the document
In Louisiana, a Durable Power of Attorney works mostly the same as described here, but there are different terms. Usually a DPOA is called a “Representation and Mandate”.
Representation is when you give someone else the power to make decisions on your behalf in two situations:
- You decide there are certain decisions (for example, financial or medical) that you want someone else to make for you, OR
- You name someone to make decisions for you if you lose the capacity to do so yourself
The principal (or grantor) is the person who gives decision-making power away (your adult child).
The representative (or mandatary) is the person who gets the decision-making power (you, or another adult).
Procuration is the act when your child names you as the representative and lists what you have the power to decide.
A mandate is the legal contract between your child and you that describes your authority and responsibilities.
A procuration becomes a mandate when you agree to accept the responsibilities.
4. Health Care Proxy
A health care proxy lets you manage your adult child’s medical care if they are not able to do it themselves. It is the same as a Medical Durable Power of Attorney. If you have a DPOA that includes medical decisions, you would not need a health care proxy as well.
A health care proxy is usually meant for a medical emergency, and is only active if the person is unable to take part in treatment decisions. For example, if your child is taken to the emergency room and you don’t have guardianship or another legal permission to speak for them, this would allow you to give consent for urgent treatment. For this reason, it’s a good idea to have a health care proxy for all family members even if they don’t have a disability.
If you want to make decisions for routine, non-emergency care, many doctors still use this form. But if you and your adult child give conflicting instructions, the doctor must follow your child’s wishes.
How to get a health care proxy for your child:
- Find a health care proxy form: You can search online for a form from your state, or ask your local hospital or health center (Here are examples from Massachusetts and Louisiana)
- Help your child fill out the form: The form is written from your child’s point of view. They are the “principal” and you would be the “agent” that they name. They can name an alternate agent who could make decisions if you were not available. You can also write in exceptions for certain decisions or situations
- You and your child sign the form in front of 2 witnesses: Before signing the form, make sure you have 2 witnesses present. Witnesses must not be related to you and your child by blood or marriage. The alternate agent and witnesses also sign the form
- Make 5 copies of the form and give one to each:
- your adult child
- the alternate agent (if there is one)
- your child’s doctor
- your child’s health insurance plan
You might also want to give copies to other family members or others who will be involved in healthcare decisions.
5. Getting permission to help manage education, healthcare, and insurance
This doesn’t relate specifically to making decisions, but if you don’t have a DPOA or health care proxy, you may want to get permission to manage your child’s IEP, see their medical records, or communicate with their insurance company.
If your child is still in school but over 18, you can no longer make decisions about their education services or sign their IEP. If you want to get permission to keep managing their education services, they will have to sign a form from the school system.
Ask your IEP team or the school district’s Special Education office about this. They can tell you what you need to do and give you the form to fill out.
Medical Release Form
A medical release form lets you get specific information from your child’s private medical records. It only lets you see the information and communicate with the doctor. It does not give you any say in decisions.
When your child fills it out, they’ll include the name of the doctor or health center that will share the records with you. (If there is more than one place your child gets care, you can usually list others on the back of the form. Or you can sign a form for each provider organization.) You can customize the form to include certain types of records but not others. For example, your child may want to keep records about sexual health private, but let you see all others.
You may need 1 or 2 witnesses to sign as well. This varies by state.
Make copies of the signed form for the doctor (or healthcare organization), your child, and your own records.
Permission to communicate with the health insurance company
If you want to help your adult child with their health insurance, you need to get authorization (permission) from the insurance company. This allows you to file a claim for your child, confirm that they can go to a specialist, or find out if a certain service or medicine is covered.
Call the customer service number on your child’s insurance card, and ask for the form to give you permission to speak for them. They’ll tell you what you need to do.
You can only get this permission if you have the legal right to conduct affairs on behalf of your child. You’ll have to submit proof, and can use any of these documents:
- Custody agreement
- Guardianship appointment
- Power of Attorney
- Health care proxy
If your child has an intellectual disability, you may need to figure out what support they’ll need in order to make decisions about their life after they turn 18. This is an important process, and should be done with careful thought, empathy for your child, and the facts about the options. Your child should be as involved in this process as they are able to be. If your child has the capacity to make some decisions about their life, you should first consider these alternatives to guardianship.