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Plain Language Summary: How to Locate Services Available to Individuals with Developmental Disabilities: Caregiver Perspective

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

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.

School-Age Children

Children with developmental disabilities often struggle with school. There are several school-based services that can help. These include:

  • Individualized Education Programs (IEP): IEPs are plans of support provided by schools to students with disabilities. These plans list out services and any changes to the school’s curriculum that your child might need. IEPs also include academic goals for the child and are reviewed every year.
  • 504 Plan: Children who don’t qualify for an IEP may qualify for a 504 plan. 504 plans do not change the curriculum and provide accommodations for students with a disability, including mental health issues.

To learn more about services that may be available for your child at school visit the Understood webpage called School & Learning.

Post Highschool/Adulthood

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.

Additional Resources

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.

Plain Language Summary: Increasing Caregiver Awareness: Helping Identify Anxiety and Depression in Individuals with Down Syndrome

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.

Read the full Increasing Caregiver Awareness: Helping Identify Anxiety and Depression in Individuals with Down Syndrome fact sheet.

Basic training for primary care providers to properly address behavioral concerns and the needs of patients with disabilities.

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.

Plain Language Summary: Intimate Partner Violence & People with Disabilities

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

The Journal of Mental Health Research in Intellectual Disabilities is a peer reviewed journal providing articles on a number of mental health topics and intellectual disabilities.

The Keller-10 Mental Health Screening Tool is a generic tool, not specifically created for people with developmental disabilities, but useful for screening for mental health concerns.

A 2-page screening tool to help provide basic insight into an individual’s experience with mental health.

green and blue logo for mental health and developmental disability natinoal training center

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