As advocates for our loved ones and the DS community, here's what you need to know
60 95 19 60 38 15 40 943 2000 1860
Many of these numbers may surprise you, but each is important and tells a story that should compel us all to action;
60
The average lifespan for people with Down syndrome today is 60+ and growing. In the 60's that number was around 10 and in the 80's average lifespan stood at 27. This number continues to grow with medical awareness and advances, but also due to societal and cultural changes as well as the growing number of resources ranging from therapy, inclusive schooling, work opportunities, continuing education after high school, and independent living options. In fact, this number has grown so much that the current generation is the first to outlive their parents. This introduces great opportunities and many challenges along the way.
95
One of the challenges of longer lifespans is health. The most prevalent challenge for adults with Down syndrome is Alzheimer's disease. By the age of 60, 95% of adults with Down syndrome will have Alzheimer's. Many will show signs in their 40's. While there are currently no cures or preventable steps, there are resources that can help to improve cognitive ability. Additionally, we partner with LuMind IDSC who provides a valuable bridge between the Down syndrome community and the research community. They are doing the yeoman's work to help find that cure for our kids and future generations. Please consider participating in research or donating to their cause.
19
Only 19% of people with intellectual/developmental disabilities are employed (vs. 62% of the general population). Not only does work provide some spending money; more importantly, jobs provide skills, social interaction, and pride. It doesn't matter how many hours one works but this activity is essential to their personal growth and happiness.
60
Recent survey's indicate that 60% of adults with I/DD live in their family home. The rest live in group homes (16%), their own home/apartment (11%), foster homes (5%), or living communities (8%). We've found talking about independent living with parents (not necessarily the individual with Down syndrome themselves) is quite difficult. It introduces a wide range of considerations including security, obligation, cost, and more. But reflect back to the first '60' at the top, average lifespan. Most likely, our sons and daughters will outlive us. Who will take care of them? Who will make that decision, especially if we aren't able? Furthermore, such independence drives skill development, social connections, life accomplishments, and pride. Evaluate your options now, before you are forced to!
38
Only 38% of American families have a Last Will and Testament. All families should but especially those with I/DD. Without a Will, your assets may be held up in court for months or years, no one will know your intentions for your assets, or for guardianship of your kids. And if your Will is not constructed in concert with a Special Needs Trust, funds could violate Social Security rules and make your son or daughter with Down syndrome ineligible for further SSI benefits as well as Medicaid and more. Prepare now!
15
Approximately 15% of those with Down syndrome are eventually diagnosed on the Autism spectrum as well; ie, dual diagnosis. Know the signs, educate yourself and your doctors. The earlier we know of such a diagnosis, or the signs for other common adult issues like sleep apnea, hypothyroidism, Celiac disease, obesity, and more, the better chance we have to address them best.
40
Roughly 40% of children with Down syndrome are considered obese (relative to 16% of adolescents in the general population). This statistic likely continues to grow in adulthood as poor eating or exercise habits accumulate. This is not about body shaming but about living one's best life. Obese people often also have issues with sleep apnea, depression, and Alzheimer's. Awareness and exposure to health choices at every age is essential.
943
In 2024, the maximum SSI benefit is $943 per month. All people with Down syndrome should be eligible from the age of 18 (some earlier depending on specific family circumstances). However, most families only get 2/3rds of $943 because SSI considers if the individual with I/DD pays rent or rent is covered by others. The latter is typically the case and justifies SSI in reducing benefits by 1/3. Consider utilizing an ABLE account and a simple contract between parents and the individual with Down syndrome so that the parents deposit agreed-upon rent (say $600) into their ABLE account, from which your loved one pays that same rent back to you. The contract and documentation of payment from ABLE should suffice in reinstating the full SSI amount. Families should also apply for SNAP (formerly Food Stamps and HIPP (reimbursement for monthly medical insurance premiums through your employer), both of which can add up to $600+ per month! Independence is fantastic but not cheap. Make sure you are getting everything you deserve.
2000
Generally, if. your loved one has $2000 or more in assets (ie, their bank account, stocks or credit cards in their name), Social Security will terminate their SSI benefits...forever! This also will likely lead to termination of Medicaid, Medicaid waiver eligibility, and connection to the parent's RSDI (proceeds in case of parent's disability, retirement, or death). Be sure you know the many ways your family may lose benefits. Ignorance is definitely not bliss.
1860
In addition to the $2000 maximum assets, if your loved one earns $1860/month or more, they can also lose their SSI etc benefits. This should not be an issue for those working 10-20 hours per week, but if one works 30hrs per week at $15.50 per hour, they could exceed this cap. It become even more plausible if they receive holiday bonuses or get paid every other week instead of twice a month because this third pay check could definitely lead to excess income. Be aware of this cap and consider your 'Moment of Truth' before your loved one starts working. Otherwise, you could be risking hundreds of thousands of dollars or more!
The more we all know, the better equipped we will be to support our loved one's dreams and minimize the surprises along the way.
Want to Learn More?
Check out our diverse blogs split out by age ranges
Consider picking up The Essential Guide for Families with Down Syndrome to help fill in the blanks and provide you with the resources you'll need.
Utilize other website resources including an Independence Assessment Quiz, our 10x10 YouTube series, and a fabulous Resource Directory.
Got more questions? Join our live virtual webinar in April. Find out more and register here!
The Essential Guide was honored with the Gold Award by the Nonfiction Authors Association!
The Essential Guide provides step-by-step support to:
Inspire mindset shifts toward one of independence and possibilities
Foster independence building blocks from the earliest age
Highlight health risks and financial resources every family must know
Detail education and work options to promote community inclusion
Evaluate family- and community-based home options including the search process
The Guide presents action items and worksheets to equip you with a clear timeline and path. The resources and references sections will save you time and money in your search for information and organizations that support your family’s journey.
“As parents, we are the experts of our loved ones, and this is an excellent resource in navigating our own decisions to better support the goals and dreams of those we love.” Tara Goodwin, D.O., Adult Down Syndrome Clinic, QuestCare Dallas
Friedman intersperses relatable and inspiring stories from a wide array of families. Insights from many experts in the fields of communications, education, health, and financial planning provide the confidence and guidance for you to navigate your family’s path toward independence.
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Beyond Down Syndrome is proud to donate a portion of all book sales proceeds to LuMind IDSC to support Down syndrome research specifically focused on the link with Alzheimer's disease. Did you know that 12% of the US population will be afflicted by Alzheimer's but 95% of the Down syndrome community will have Alzheimer's by the age of 65, often exhibiting first signs decades earlier. Together we can make a difference!
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