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When a person turns 18 in the United States, they are called a legal adult. A legal adult is given rights, like voting and signing forms for themselves. When a person becomes a legal adult, they usually become their own legal guardian too. A legal guardian makes other important choices, like medical decisions. Sometimes a judge will decide that it is better to have someone else make those important choices.
Guardianship is when a judge decides someone else should make some important decisions for a person with a disability. The person a judge picks to make choices is called a guardian. A guardian can be a mom or dad or someone else the judge picks. A guardian can make decisions about things like how a person with a disability spends their money. Guardians can also decide what doctors the person needs to see and what medicines they should take. Guardians are supposed to make decisions to keep the other person healthy and safe.
Guardianship is not the only option. Another option to help people with disabilities make decisions is supported decision making. Supported decision making lets the person be their own guardian. This means the person makes their own decisions but they have a team to help. This team is made up of people the person picks like family, friends, support workers and more.
There can be challenges with guardianship and supported decision making. For example, a person with a disability may be given a guardian when they do not need one. Or, a guardian might not put the other person’s needs first.
With supported decision-making, sometimes the team has trouble helping the person make a decision without being too bossy. They have to remember that the person with the disability is the one in charge. The team should only help to make a decision when it is needed. If the person can decide by themselves, then the team doesn’t need to help.
Supported decision making can be a good choice for many people. It can give a person with a disability a safe way to be more independent. For some people, guardianship is the better choice. It is important for a person with a disability to think about what is best for them.
To learn more, read the MHDD fact sheet about Guardianship and Supported Decision Making. You can also visit the Utah Parent Center website to learn more about supported decision making and to view a Self Advocate’s Guide to Supported Decision Making.
Read the full Guardianship and Supported Decision Making fact sheet
Healthcare for Adults with Intellectual and Developmental Disabilities: Behavioral and Mental Health Issues is a toolkit designed for Primary Care providers specifically created for working with people with developmental disabilities who also experience concerns with behavioral or mental health.
Hearing our Voices: Treatment Needs of Young Adults with IDD and Mental Health Conditions webinar about the needs of young adults with IDD and mental health concerns.
Many parents and caregivers of children with developmental disabilities have difficulty navigating resources that can be helpful to them. Since some U.S. states provide varying services, the information provided below is based on what is available in the majority of states.
Early intervention means providing therapy or other services to children before they start school. When you start treatment early in a child’s life, they learn skills needed to be successful later in life. Early intervention programs can help diagnose a developmental disability and provide helpful treatments.
Federal laws allow states to develop these programs for children up to 3 years old. These programs are often free or offered at a low cost. Each state’s early intervention programs can be found on the Center for Disease Control early intervention webpage.
Children with developmental disabilities often struggle with school. There are several school-based services that can help. These include:
To learn more about services that may be available for your child at school visit the Understood webpage called School & Learning.
Unfortunately, many of the free services provided by the public school system will end when someone with a disability becomes an adult. Also, when someone becomes an adult, all their rights are transferred from their parents to them.
Families of people with disabilities should look into their state’s requirements about becoming a legal guardian. This option is not right for everyone. There is also another option called supported decision-making. Supported decision-making provides a person with help in making big choices about their life, independently of others.
For more information about what your state requires for guardianship or for other alternatives, go to the National Disability Rights Network website to find services close to you. To obtain additional information on your state’s options for supported decision making, visit the National Resource Center for Supported Decision Making website. You can also learn more about guardianship and supported decision-making in the MHDD information sheet called Guardianship and Supported Decision Making.
Many states also have programs that help people with disabilities make the transition to adulthood. These programs teach a person how to take care of themselves, social skills, job skills, and improve their education. To browse and find out more about colleges that offer programs for individuals with developmental disabilities, go to the Think College website and take the time to see if this is the right option for your family.
There are also nation- and statewide resources that can be used, no matter how old a person is. Each one of these resources can be found in your area by visiting their web pages or social media accounts. These include Parent Centers, Developmental Disabilities Council, The Arc, Best Buddies, among many others.
Read the full How to Locate Services Available to Individuals with Developmental Disabilities: Caregiver Perspective fact sheet.
Down syndrome is a disorder that occurs in about 1 in 700 people. People with Down syndrome have unique problems that can contribute to mental health issues throughout their lives.
Anxiety and depression are the most common emotional problems someone with Down syndrome might experience. Anxiety is when you worry or have fear. Depression is when you have feelings of sadness, guilt, and worthlessness. It can be difficult for someone with Down syndrome to talk about their feelings. Their caregiver and/or family should look for changes in their behavior to see if there are signs of anxiety or depression, rather than relying on verbal communication.
For children, these signs can be: acting out, ignoring friends, not playing as much, no longer liking favorite things
For teens and young adults, these signs can be: aggression, fidgeting, no longer liking favorite things, ignoring friends, sadness
For older adults, these signs can be: crying, losing weight, difficulty sleeping, aggression, no longer taking care of themselves
If you are a caregiver or family member of someone with Down syndrome, then you should be aware of these signs. It’s important to notice changes from someone’s normal behavior and get help from a professional if you’re worried about your loved one.
A webinar from the Interdisciplinary Technical Assistance Center on Autism and Developmental Disabilities about Autism Spectrum Disorder (ASD), infant/early childhood development, and infant mental health.
Domestic violence can mean the abuse of children, other family members, and romantic partners. Intimate partner violence (IPV) is one example of domestic violence and specifically means the abuse of a current or past romantic partner. Every year more than 10 million people in the United States experience IPV. But many people who experience IPV do not report it. People with disabilities are more likely to experience IPV and have more challenges with reporting than people without disabilities.
IPV includes many kinds of abuse: physical, emotional/verbal, psychological, sexual, and financial/exploitation. Some examples of physical abuse are hitting, damaging property, and keeping someone from eating or sleeping. Damaging or keeping someone from using their wheelchair or communication device is abuse too. Emotional/verbal abuse includes name-calling, keeping a partner away from friends and family, and saying they deserve the abuse because of their disability. Psychological abuse can include telling a partner that their disability is not real. Psychological abuse can be when someone threatens to kill or hurt themselves, their partner, children, or animals. Sexual abuse can be forcing someone to do sexual acts or making them scared to say no. Also, touching a person with a disability in an appropriate way while assisting with hygiene or dressing is sexual abuse. Financial/economical abuse is misusing or controlling a partner’s money, credit, or ability to have a job.
Leaving an abusive relationship can be difficult. One recommendation is to make a safety plan. A safety plan lists steps to take when you are in a bad situation and who you can call, such as friends, families, and resources. You can call the National Domestic Violence Hotline at 1-800-799-7233 to create a safety plan or visit their website for more information. This information is also available in Spanish. The National Domestic Violence Hotline also provides services for individuals who are Deaf or hard of hearing.
IPV is never okay. If you or someone you know is experiencing IPV, please know there is help available and your well-being is important. Crime victim compensation programs can help pay for mental health counseling and other services. You can find your state’s program at www.benefits.gov, which has a Spanish translation option.
If a loved one tells you they are experiencing IPV, it is important to be supportive. You can also let them know resources are available. You can use this domestic violence resource locator to find IPV resources nearby.
Read the full Intimate Partner Violence & People with Disabilities Fact Sheet
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