What is life like for adults with Down syndrome? What happens after a person with Down syndrome graduates? And what about employment?
Because Down syndrome is a permanent, genetic disorder, people with Down syndrome need a long-term plan. Many adults with Down syndrome lead happy, authentic, and productive lives.
The best long-term plans for people with Down syndrome include gainful employment, strong social connections, and the right tools in place to succeed.
In this article, the Ability Central team answers some of your most pressing questions about long-term care and financial resources for people with Down syndrome, their loved ones, and their caregivers.
We answer questions like:
Is Down syndrome a disability?
Does the Americans with Disabilities Act (ADA) cover Down syndrome?
What government programs offer support for people with Down syndrome?
What school accommodations exist for people with Down syndrome?
What workplace accommodations exist for people with Down syndrome?
What jobs are best for people with Down syndrome?
Can people with Down syndrome live alone?
Is Down syndrome linked to dementia or Alzheimer’s?
How does elder care change for people with Down syndrome?
Where can I find a Down syndrome support group?
Is Down syndrome a disability?
Down syndrome is often considered a disability, but the legal definition can sometimes change.
In general, Down syndrome symptoms tend to be severe enough to impact someone’s daily life. Most people with trisomy 21, which covers about 96% of all Down syndrome cases, experience physical and cognitive delays or impairments that affect their daily lives and independence.
However, some people with mosaic Down syndrome experience milder symptoms, which may not be as obvious.
To qualify for benefits like Social Security Disability Insurance (SSDI), a person with Down syndrome must have a documented diagnosis and medical records that confirm their symptoms. It’s important to establish your disability status with your doctor before applying for government funding or other benefits.
Key Takeaways:
Down syndrome can be considered a disability when symptoms impact someone’s daily life.
To qualify for benefits and federal funding, a person with Down syndrome must have a documented diagnosis and medical records confirming their symptoms.
Does the Americans with Disabilities Act (ADA) cover Down syndrome?
The Americans with Disabilities Act, or ADA, guarantees certain rights for people with disabilities that “substantially limit” one or more major life activities. So, is Down syndrome protected by the ADA?
The ADA does not keep a strict list of protected disabilities. Instead, the ADA’s protections apply to “anyone with a disability.”
The ADA defines a person with a disability as someone who:
Has a physical or mental impairment that substantially limits one or more major life activities,
Has a history or record of such an impairment, or
Is perceived by others as having such an impairment
Under this definition, Down syndrome could qualify as a disability under the ADA when symptoms are severe enough to disrupt someone’s daily life. This varies on a case-by-case basis, so consult a local disability rights nonprofit or a disability rights attorney to learn more about your options.
To learn more about the ADA, its history, and what it guarantees, see ADA Overview: What Is the Americans With Disabilities Act?
Key Takeaways:
The ADA does not cover specific disabilities, but rather “anyone with a disability.”
Down syndrome may qualify for ADA coverage when symptoms are severe enough.
What government programs offer support for people with Down syndrome?
If you live in the United States, federal and state governments offer programs that can offset the cost of Down syndrome early intervention, therapy, or other treatments.
Contact a local representative to find out if you qualify for one of these government-sponsored options:
The Affordable Care Act (ACA) offers private insurance plans to people who may not have coverage due to low income or other situations.
Medicare covers people with permanent disabilities and those 65 years old or older.
Medicaid covers people with disabilities who have lower incomes.
Medigap insurance supplements someone’s Medicare coverage. Depending on your Medicare coverage, Medicap can help cover additional costs associated with autism care.
Supplemental Security Income (SSI) is a federal benefit program administered by the Social Security Administration (SSA). It provides monthly payments to blind or disabled people at least 65 years old, and is reserved for people with severe, chronic conditions and significant financial need. For more information, see the SSA website.
Social Security Disability Insurance (SSDI) helps offset some of the financial burden put on families caring for someone with Down syndrome. The Social Security Administration (SSA) keeps a “blue book” of confirmed disabilities that automatically qualify for certain benefits. Most forms of Down syndrome are part of this blue book, meaning people with Down syndrome can be considered disabled from birth (and their families can qualify for financial support). The exception here is mosaic Down syndrome, which often has milder symptoms, and requires a longer application/verification process.
Key Takeaways:
* Some government-funded programs offer support for people with Down syndrome in the United States.
* People with Down syndrome may qualify for funding or other support through the Affordable Care Act, Medicare, Medicaid, Medigap, or Supplemental Security Income.
* Most forms of Down syndrome are in the SSA’s “blue book” of disabilities that automatically qualify for Social Security Disability Insurance (SSDI). The exception is mosaic Down syndrome, because its symptoms can be mild enough to not qualify as a disability.
What school accommodations exist for people with Down syndrome?
Included in the ADA’s protections for people with Down syndrome, accommodations and modifications at school or at work offer new, individualized ways to succeed.
Some kids with Down syndrome are homeschooled or attend special schools with Down syndrome-specific curriculum and lesson content. In recent years, however, a growing number of parents choose to send their kids with Down syndrome to public schools, where they can study in the same environment as their peers without the condition.
Recent research suggests that attending public schools can help children and teens with Down syndrome:
Build a sense of independence.
Form relationships and strong ties with their community.
Develop social skills.
Most of the time, although students with Down syndrome can take classes alongside their neurotypical peers, they may need accommodations or modifications like:
Different teaching and comprehension methods, like recording a lecture instead of taking notes.
Visual explanations of complex material, since many people with Down syndrome are visual learners.
Reduced expectations on school assignments, like shorter essays or simplified tests.
A one-on-one teaching assistant or classroom aide to help with comprehension and retention.
Support sessions from counselors or other education specialists both to manage school performance and tackle social situations.
More frequent breaks to eat, drink, or decompress from stimulation.
Key Takeaways:
Students with Down syndrome typically attend school at home, in specialized schools, or in public schools alongside their peers without the condition.
Kids with Down syndrome who study at public schools may find benefits like building independence, forming strong community ties, and developing social skills.
Down syndrome school accommodations and modifications might include different teaching methods, visual learning tools, shorter assignments, one-on-one support from aides or specialists, and more frequent breaks.
What workplace accommodations exist for people with Down syndrome?
Many teens and adults with Down syndrome hold paid or volunteer jobs in their communities in one of three categories:
Competitive employment for people with Down syndrome involves traditional responsibilities and job skills, usually assisted by a job coach, employment specialist, or supervisor. This aide assists a person with Down syndrome until they are independently successful at their job.
Supported employment for workers with Down syndrome follows a similar model, except the aide continues to help out for as long as the employee stays in their role.
Sheltered employment for adults with Down syndrome takes place in specialized workshops or work environments catering specifically to people with disabilities. Sometimes, these organizations are government-sponsored, although more often they are private or nonprofit organizations.
Workplace support or accommodations for someone with Down syndrome might involve:
Accessible technology (where applicable)
Flexible scheduling and responsibilities
Safe workspaces with easy access (e.g. workplaces without a complicated sign-in or bag search system)
Simplified work responsibilities
Support from supervisors, coworkers, or job coaches
To learn more about workplace accommodations for people with disabilities, see Disability Rights in the Workplace: An Overview and Employee Guide: How to Ask for Workplace Disability Accommodations.
Key Takeaways:
* Workers with Down syndrome usually seek competitive employment (traditional responsibilities assisted by a temporary aide or supervisor), supported employment (competitive employment with longer-term assistance), or sheltered employment (roles in specialized workplaces that cater to people with disabilities).
* Workplace accommodations for people with Down syndrome include accessible technology, flexible scheduling, easy access, simplified responsibilities, and ongoing support from supervisors, coworkers, or job coaches.
What jobs are best for people with Down syndrome?
Some successful jobs for people with Down syndrome might include:
Acting or modeling
Bagging or stocking at a grocery store
Bussing, cooking, cleaning, hosting, or serving at a restaurant
Envelope stuffing or other administrative work at a corporate office
Folding clothes at a retail store
Greeting customers at hotels or big-box stores
Ushering at a theater
Working outdoors with a landscaper or home cleaning service
Many people with Down syndrome may initially choose to volunteer instead of taking on a paid role. This can help teens with Down syndrome build critical skills or bypass waiting lists for paid employment opportunities.
Volunteer work helps teens and adults with Down syndrome learn, create, or build:
Appropriate behaviors and activities for work environments
How to work with a boss or supervisor
Job skills for future roles
Relationships and social connections
Self-confidence
Task and time management skills
People with Down syndrome can volunteer for any task they think they’ll be good at, but it’s against the law to take on a volunteer role that workers are normally paid for.
For example, a teenager with Down syndrome could volunteer at a local park or library, but only for roles and tasks that volunteers take on without compensation. On the other hand, that same teen could not volunteer as a host at a local restaurant or cashier at a for-profit retail store because those roles are typically paid positions.
Key Takeaways:
Great jobs for people with Down syndrome include work as an actor, model, usher, stocker, restaurant worker, administrative assistant, greeter, landscaper, or gardener.
Many teens and adults with Down syndrome choose volunteer work to build job skills and self-confidence, but it’s illegal for anyone to volunteer for a role that is normally paid.
Can people with Down syndrome live alone?
Yes! Depending on the severity of their symptoms, someone with Down syndrome may be able to live independently.
People with Down syndrome who need more support might live in:
Assisted living facilities
Community homes for people with Down syndrome
A caregiver or family member’s home
Student housing if they choose to attend university
An independent apartment with check-ins and support from guides and coaches
It’s important to remember that people with Down syndrome experience many of the same challenges and opportunities as people without the condition. No two people with Down syndrome are alike, so someone’s personal successes and independence level depend on their skills, symptom severity, and interests.
With the right support, young adults with Down syndrome can:
Adopt pets.
Attend social events and parties, although people with Down syndrome should not drink or take substances. The extra chromosome associated with Down syndrome impacts metabolism, making it difficult for their bodies to process things like alcohol or drugs.
Be sexually active.
Drive and get a license.
Get married.
Start a family and have kids.
Key Takeaways:
Adults with Down syndrome can live alone, drive, have children, adopt pets, and attend social events or parties.
Some adults with Down syndrome flourish best living in an assisted living home, community home for people with disabilities, or a family member’s or caregiver’s home.
People with Down syndrome should not drink alcohol or abuse substances because their metabolisms have a harder time processing toxins.
Is Down syndrome linked to dementia or Alzheimer’s?
Yes. Research shows that people with Down syndrome have a much higher risk of developing dementias like Alzheimer’s disease. Not every person with Down syndrome develops dementia, but those who do have a slightly higher risk of early-onset symptoms as young as age 40.
Alzheimer’s disease affects around:
30% of people with Down syndrome in their 50s
50% of people with Down syndrome in their 60s or older
While memory issues are usually the first indicator of Alzheimer’s, onset for people with Down syndrome tends to affect social skills first.
Adults with Down syndrome’s earliest Alzheimer’s symptoms might include:
Difficulties with movement and coordination
Lack of enthusiasm for things they usually enjoy
Less interest in socializing
Notable increases in excitement or noisiness
Seizures
Strong emotions like fear, anxiety, or sadness
Struggles with concentration or paying attention
Stubbornness, irritability, or aggression
Key Takeaways:
Adults with Down syndrome have a much higher likelihood of developing Alzheimer’s disease or dementia. Dementia affects approximately 30% of people with Down syndrome in their 50s and 50% of people with Down syndrome in their 60s or older.
Rather than affecting memory, early Alzheimer’s symptoms for people with Down syndrome tend to affect social skills first, like mood changes, coordination challenges, increased noisiness, seizures, or a lack of interest in socializing or things they usually enjoy.
What does elder care for people with Down syndrome look like?
Historically, people with Down syndrome lived very short lives, but modern advances in medicine, technology, awareness, and acceptance have helped more people with Down syndrome live into their 50s, 60s, and 70s.
Longer lifetimes mean more time for joy and happiness, but Down syndrome in old age also brings some complications. Many elderly people with Down syndrome experience:
Accelerated aging, “old age” symptoms that start as young as 40s or 50s.
A greater need for assistive technology devices like hearing aids, tablets, or communication boards.
Physical health problems like thyroid issues, sleep apnea, arthritis, osteoporosis, celiac disease, and spine damage. These health issues are often misdiagnosed, undiagnosed, or mistaken for behavioral problems, which makes care and comprehension more difficult.
Sensory problems, especially hearing loss, cataracts, and vision changes.
According to The Arc, an organization that protects human rights for people with I/DD, elder care for people with Down syndrome should include:
A trusted care team that includes doctors, specialists, and caretakers with familiar faces.
An elder care plan that includes housing, finances, medical decisions, and end-of-life care choices.
Extensive, regularly-updated medical records that include family history, mental health, and physical health assessments.
Frequent checks on mental and psychiatric health, like assessments for depression and anxiety.
Lower dosages and longer adjustment periods when starting a new medication or changing a prescription.
Low-stress environments with no loud noises, disruptive housemates, or bad lighting.
Reassurance, redirection, and truthful communication, especially for health issues they may not understand due to Down syndrome or early Alzheimer’s symptoms.
Social opportunities designed for people with Down syndrome, particularly as their communication needs change.
Special consideration for Alzheimer’s disease, which disproportionately affects elders with Down syndrome.
Key Takeaways:
Many people with Down syndrome experience “accelerated aging,” or earlier onset of physical, sensory, and mental health problems associated with old age.
Elders with Down syndrome may rely more on assistive technology devices.
Elder care for people with Down syndrome should include a comprehensive care plan that covers housing, finances, medical care, and end-of-life care.
Elderly people with Down syndrome may benefit from frequent physical and mental health checks, reassurance, low-stress environments, and social opportunities designed for the changing communication needs of people with intellectual disabilities.
Where can I find a Down syndrome support group?
Down syndrome is best managed with the support of people who know what you’re going through. Joining a Down syndrome family support group can be hugely helpful for parents and caregivers who need to feel grounded.
Benefits of Down syndrome support groups include:
A safe space to process complicated emotions like disappointment, grief, frustration, or anger
Access to the latest Down syndrome research
Connections with local families, parent groups, and other resources
Feelings of understanding, emotional support, and hope for the future
Find Down syndrome support groups by contacting a local nonprofit or checking out resources like:
Key Takeaways:
Support groups for people with Down syndrome, their families, and their caretakers help people feel grounded, stay up to date with the latest research, and find actionable advice from people sharing similar experiences.
You can find Down syndrome support groups through local nonprofits, Facebook groups, or Down syndrome research organizations.
Where can I get more information about Down syndrome?
To learn more about Down syndrome, check out Ability Central’s resources:
8 Ways to Recognize Down Syndrome: Symptoms, Warning Signs, and Diagnosis
The 7 Most Important Things To Do After a Down Syndrome Diagnosis
To find a nonprofit near you offering support for people with Down syndrome and their families, check out Ability Central’s Service Locator tool.
In conclusion…
Down syndrome may qualify as a disability eligible for ADA coverage when symptoms are documented and severe enough.
Some government-funded programs offer support for people with Down syndrome in the United States like the Affordable Care Act, Medicare, Medicaid, Medigap, Supplemental Security Income, or Social Security Disability Insurance.
Students with Down syndrome typically attend school at home, in specialized schools, or in public schools with accommodations and modifications like different teaching methods, visual learning tools, shorter assignments, frequent breaks, and one-on-one support.
Workplace accommodations for people with Down syndrome include accessible technology, flexible scheduling, easy access, simplified responsibilities, and ongoing support from supervisors, coworkers, or job coaches.
Great jobs for people with Down syndrome include work as an actor, model, usher, stocker, restaurant worker, administrative assistant, greeter, landscaper, or gardener.
Many teens and adults with Down syndrome choose volunteer work to build job skills and self-confidence, but it’s illegal for anyone to volunteer for a role that is normally paid.
Adults with Down syndrome can live alone, drive, have children, adopt pets, and attend social events or parties, although some adults with Down syndrome flourish best living in an assisted living home, community home for people with disabilities, or a family member’s or caregiver’s home.
People with Down syndrome should not drink alcohol or abuse substances because their metabolisms have a harder time processing toxins.
Adults with Down syndrome have a much higher likelihood of developing Alzheimer’s disease or dementia.
Many people with Down syndrome experience “accelerated aging,” or earlier onset of physical, sensory, and mental health problems associated with old age.
Elder care for people with Down syndrome should include a comprehensive care plan that covers housing, finances, medical care, and end-of-life care.
You can find Down syndrome support groups through local nonprofits, Facebook groups, or Down syndrome research organizations.
Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
