CELEBRATING THE JOURNEY ON WORLD DOWN SYNDROME DAY
Four facts should prompt you to action:
#1: As recently as the '80s the average lifespan for people with Down syndrome was 27! Now it is 60 years old plus.
#2: Today's adults with Down syndrome are the first generation that will outlive their parents.
#3: Most families believe "independence" is a transitional age (18-22) topic.
#4: Alzheimer's afflicts nearly everyone (95%) with Down syndrome by the age of 60 with many showing initial symptoms before 40.
These facts motivated us and provided a sense of urgency!
Gwendolyn moved into her own place at the Marbridge Residential Living Community outside Austin, Texas when she was 27...the same age as the average lifespan for people with Down syndrome in the '80s, not much before she was born in 1994.
Back in the '80s and prior, life for families with Down syndrome was likely more frustrating but perhaps a bit simpler. Frustrating because of the lack of services and options, but a bit simpler given the abbreviated lifespan and the expectation the individual with Down syndrome would live with family for their lifespan.
Fact #4 re the prevalence of Alzheimer's in our community raises a sense of urgency to help our loved one's achieve their dreams throughout their extended life and certainly before this horrible disease takes control. It also raises the likelihood that other housing and care options beyond the home will be necessary to ensure proper care. This was not an issue when lifespan rarely approached 40, but now all families must come to terms with this new reality.
So what does an extended lifespan look like?
An extended lifespan brings tremendous new opportunities and challenges:
Opportunities: Many people with Down syndrome are now:
attending inclusive colleges,
maintaining part-/full-time employment,
enjoying meaningful relationships including marriage,
living in their own apartment or residential community.
Challenges: Often stemming from these opportunities, families need to focus on:
financial needs for a lifetime and the role of public benefits
requirements such as asset and earning limitations in order to maintain SSI and thus Medicaid, as well as Medicaid Waiver program and parental Social Security eligibility
health conditions as aging adults including Alzheimer's disease
housing options when family options are no longer feasible and/or when your loved one is ready for more independence
How can you prepare for these opportunities and challenges?
Shift Mindset: Shifting from lost dreams and limitations which might naturally dominate your thoughts in the first days toward one of opportunities and dreams will go a long way in making the 21st-century possibilities a reality for your family.
Make a plan: regardless of the age of your loved one with Down syndrome, make a plan. As your loved one matures, involve them in this discussion and update the plan as necessary. Sometimes solutions like post-high school education, great day programs, and housing options are limited in your area. Start early and explore existing options and the possibilities of starting new options (with your local DS Association or resources) in your community.
Consider your financial situation and plan accordingly. Could your loved one provide for themselves through employment paychecks? This is quite unlikely for their full lifetime, in which case it is critical to maintain eligibility to public resources by not exceeding asset (esp. bank account) and monthly earnings limits.
Get on Medicaid Waiver program waiting lists from the earliest of ages. Some of these lists are decades long and are all state-specific so moving out of state will start your waiting time over.
Ensure Education is Independence-focused: encourage teachers/administrators to include self-care, job application and professionalism, development of choice, problem-solving, and initiative skills, transportation, shopping, and more are part of their ARD/IEP. Don't wait until the public school handrails are gone.
Age 18 is critical: while independence is a lifelong initiative, there are essential steps you should be prepared to take at age 18 including SSI and Medicaid application, applying for other benefits such as SNAP and HIPP, and considering Guardianship or alternatives.
Prepare for the cliff!: many parents describe the transition from public school at age 18-22 as a cliff. Suddenly, their loved ones are home all day. Prepare for a smooth transition into continuing education, employment, and socialization so they may continue to learn and grow. Regression Syndrome is real for those who go home and sit on the couch all day.
Consider enrolling in an Alzheimer's research program: We partner with LuMind IDSC who provides a bridge between the DS community and DS research. Your family's participation in such programs will help develop and test Alzheimer's treatment and prevention medication so perhaps this will not be an issue as your loved one ages.
Independence is truly a lifelong journey. It starts well before high school ends and it continues to evolve well after high school is over. Ensure your family is prepared so the extended lifespan is truly a blessing for everyone.
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.
GET YOUR COPY HERE!
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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