Down Syndrome: Planning for Long-term Care
Long-term care planning for a person with Down syndrome is challenging. This article addresses legal, mental health, and financial concerns.
By Ability Central
12 April, 2023
After reading about Down Syndrome Quick Facts, the Symptoms and Warning Signs, and the First Steps After Diagnosis, it is time to dive into the long-term plan. This article will address the following:
- What are mental health and disability concerns for a person with Down syndrome?
- What are the mental health concerns for a caregiver of a person with Down syndrome?
- Where can I find support groups?
- What medical and financial aid programs assist Americans with Down syndrome?
- What long-term legal plans should be considered for a family of a person with Down syndrome?
- Where can I get more information about Down syndrome?
What are the mental health concerns for a person with Down syndrome?
According to the National Down Syndrome Society (NDSS), the most common mental health concerns in individuals with Down syndrome include:
- Obsessive-compulsive behaviors
- Oppositional behaviors
- Tic disorder
The National Library of Medicine (NLM) adds to that list:
- Psychosis (including hallucinations)
- Pseudobulbar affect
- Personality disorders
The Centre for Addiction and Mental Health (CAMH) offers an excellent rundown of how these mental health issues play out at home and in the doctor’s office.
For many people with Down syndrome, these disorders can create difficulty communicating effectively. This can have a substantial impact on independence and quality of life, often leading to exclusion and discrimination. Organizations like the Down Syndrome Connection of the Bay Area offer low- and high-tech solutions that empower people with Down syndrome to access their right to communication and information.
What are the mental health concerns for a caregiver of a person with Down syndrome?
NDSS warns that parents of children with developmental disabilities experience more stress than parents of typically developing children. Over time, they say, excess stress may be a factor in the development of:
- Feelings of grief, loss, and guilt
CAMH encourages caregivers to “save some love” for themselves. They offer specifics on how to make that happen, including learning what you need and how to share that with others. See their website for more information.
Where can I find support groups?
A support group can be an excellent resource for families. There are many options both online and in-person. Here are a few to consider:
- Down Syndrome Diagnostic Network (DSDN)
- Coalition of Progressive Mothers of Children With Special Needs on Facebook
- Parents of children with Down syndrome on Facebook
- Down Syndrome Support for Mommies on Facebook
- DS Families on Facebook
- Circle 21 on Facebook
- International Down Syndrome Coalition on Facebook
- The Down Syndrome Family Network on Facebook
Ability Central also offers a nationwide database of organizations that offer support for people with Down syndrome. You can visit it here.
What medical and financial aid programs assist Americans with Down syndrome?
The Americans with Disabilities Act (ADA) covers people with Down syndrome. NDSS offers a great resource on what the ADA means for people with Down syndrome.
In addition, the US government offers several options to help with medical expenses.
- Medicaid covers people with disabilities who have lower incomes.
- The Affordable Care Act (ACA) may also assist those who qualify.
- Many people with Down syndrome also qualify for Supplemental Security Income (SSI). Learn more on the National Down Syndrome Congress (NDSC) website.
What legal long-term plans should be considered for a family of a person with Down syndrome?
To understand the legal aspects of a Down syndrome diagnosis and what families need to do to prepare from childhood to adulthood, check out the following resources:
- How to Financially Prepare for Your Child with Down Syndrome
- Making Decisions for a Child with Special Needs Who Becomes an Adult
- The National Down Syndrome Center (NDSC)
- The Sandoval Legacy Group
Where can I get more information about Down syndrome?
Ability Central offers a series of articles to further your knowledge about Down syndrome. See:
- Down Syndrome: Seven Quick Facts You Should Know
- Down Syndrome: Symptoms and Early Signs
- Down Syndrome: First Steps After Diagnosis