There are many options, but doing nothing should not be one of them!
In our personal experience and during our many coast-to-coast workshops, housing for our loved ones with Down syndrome is often the most difficult conversation to have. Today, let's talk about WHY, WHEN, WHAT, and HOW so we can all tackle this with care, compassion, and purpose.
WHY Should You Consider Housing?
When our daughter, Gwendolyn, was born back in 1994 we assumed she would live with us forever. It was our responsibility and expectations.
However, 4 things have changed our perspective over time:
Reality: during our research for the book, The Essential Guide for Families with Down Syndrome, we've learned that the average age for people in the Down syndrome community was just 27 in the 1980s. In fact, you don't have to go back far to find when it was single digits! Today, with advanced medical awareness and care, along with a more accepting social culture and an explosion of opportunities ranging from educational to vocational to independent living, people in our community now live into their 60s and beyond! This is fantastic news but it also highlights the fact the current generations will be the first to outlive their parents! So the question of independent living outside the parent's home is not a matter of IF but WHEN.
Growth: like her siblings, Gwendolyn benefits from learning and growth. If such opportunities dry up or are stripped away, we've seen her plateau and approach Regression syndrome, a real condition experienced by those who get bored or lose their educational and social connections. Like her siblings, we've realized she cannot reach her true potential under the protective umbrella of her parent's home.
Person-Centered Planning: as discussed in our Three Pillars post, we are frequently reminded of this principle. Our loved ones with Down syndrome must be part of conversations affecting them and have a voice in those decisions. Gwendolyn was loud and clear that she wanted to be independent including living outside the family home. We realized that the apprehension was not hers but ours. When we self-corrected, we began to assume the role of supporter and resource rather than naysayer.
So Many Opportunities: certainly, even if we had considered independent living when Gwendolyn was born, we would have found a very limited list of options and far few that may have met our requirements. Today, a wide range of opportunities are surfacing, which will be discussed in the WHAT section below. So our premonition that options are primarily state institutions or far away and expensive options is not the case. We must, and can, find viable options that meet our requirements (see HOW section below) and provide our loved ones with sustainable, person-centered, growth-focused options.
WHEN Should You Consider Independent Living?
I'll give you two answers to ponder:
Everyone should consider independent living early on (even in the maternity ward). We must shift our mindset from limitations to opportunities to help instill the skillsets and confidence in our children (and ourselves) early on. It's also helpful to be aware of the styles and costs of housing in your area so you can consider that in your longer-term independence plan. Perhaps there's a great option that fits your requirements (WHAT). Add them to your plan as a placeholder. Budget for your choices early on. And if you don't see a viable option, consider broader options in different cities, with different budgets and public assistance, or one that you and your local community might develop yourselves. Given the WHYs above, the demand is already overwhelming supply, so start early and consider being part of the solution.
Independence is different for everyone. Each of our loved ones has different interests and skill sets. So answering the WHEN depends on the mindset, skillset, family health and caretaking capability, and viable options in your area. For some that may align at 20 and for others at 30 or 40. Just keep in mind the WHYs and consider when growth, sustainability, or person-centered planning may be sacrificed by further delays.
WHAT Are My Options?
Independent living options are almost boundless, but I'll share 6 groupings for your consideration along with some pros/cons:
Family home: beyond us aging parents providing caretaker services, you may consider your loved one's siblings, aunts, uncles, or others. When you evaluate any of these options, consider the relative's interest and ability to provide such service and sustainability. It's not just providing a safe and secure roof over their heads, but also providing an enriching and supportive environment including shuttling to classes, work, and socials. Chances are even siblings who have grown up with Down syndrome are not familiar with the day-to-day expectations, not to mention the medical, financial, and legal responsibilities. Our book can serve as a handy and complete guide for caretakers, but if they don't have the interest or may be mobile at their age, it just may not be the right match despite the sibling's love for their brother or sister and intent to do the "right" thing. Older relatives may also be an option but consider their feasibility to provide envigorating care for the long term.
Solo apartment/condo/home: some of the more independent individuals may be ready to move into their own apartment or house. I would reserve this category for only the most independent who can manage their own time and medication and have a convenient way to get to school, work, and social activities. Some organizations are working with apartment complexes to have a wing set aside for people with IDD and have a caretaker living in their own apartment on the premises who can act as a caretaker and guardian at times. The biggest risk in this category may be security so be sure the home has a security system and your loved one is well-versed in how to use it and what to do in case of any emergency. This is typically private pay but some benefits may help cover expenses.
Buddy apartment/condo/home: this option is basically #1 but with another person in the home. The other may have DS/IDD or not but the arrangement should be complementary and help fill in some of the gaps (like reminders for schedule and meds etc). Beyond a friend or sibling, options could be elderly or college students who find the companionship mutually beneficial, as well as the sharing of rent.
Group homes: these are typically publicly funded so you may need to be off any Medicaid Waiver Plan-type waiting lists. Usually, this is a house with one caretaker and 3-6 individuals with varying IDD. Many group homes may be associated with day programs and can shuttle your loved one to these programs and associated socials, and possibly to work. The oversight can be helpful to bridge gaps you may envision from options #1/#2. However, the challenge with this option is that you don't get to select the others in the house or the caretaker, all of which may change somewhat frequently. So the chemistry that works for your loved one may have to be reset often and the risk of having a roommate with behavioral issues or a caretaker who is less than diligent or attuned to the unique needs of each individual is real.
Community homes: these are often campuses with 30-300 adult residents with various IDD. Residents live on campus and often may have classes, work, and social on campus or a shuttle away which can be very convenient and helps build strong relationships. Some of these communities may be public pay but most are private; ie, you can use your SSI, SNAP, and HIPP but not Medicaid Waiver Plan resources. Hence, the majority of the $4-6k per month is your responsibility. You should also be wary of "adult babysitting" or "slave labor shops" which either provide little variety, engagement, and support or have high expectations/requirements for work hours to support the community (think flowers, pottery, etc). We chose the Marbridge residential living community for Gwendolyn 2 1/2 years ago and we've been very happy with the results. The fact classes, work, and social are all together helps support the WHYs for Gwendolyn.
New options: given the shortage of quality independent living options across the IDD spectrum, new and creative options are arising. If you don't see what you need or want in your community, gather up other parents who are likely grappling with the same issue and discuss community homes or apartment/condo options that might service many of you. Lean on your local Down syndrome association to help raise awareness of existing options and foster discussions for new options for the future.
HOW Do I Evaluate and Choose Housing?
This is a huge decision so the evaluation and selection can't be taken lightly. This is a big reason to consider this step early. None of us want to be forced to select an option after an emergency makes our current caretaker unable to provide this critical service.
I would suggest 4 steps to this process:
Develop a long list of options: talk to other families, your DSA, your local ARC or GiGi's, etc, and Google for independent living to develop a long list.
Develop your family's list of desires: think about what you and your loved one want and what you need. Items to consider include associated safety & security, day programs/work/social, the variety of classes and menus, the quality and stability of staff, proximity, roommate pairings, public/private funding, and out-of-pocket costs. Be sure to involve your loved one in this discussion. What do they enjoy? What is important to them? What provides opportunities for continued growth?
Online research: narrow the list of options based on online research and discussions with your DSA and families.
Onsite tours: this is a critical step to see if the options and desires match. Inquire as to a day in the life of residents and how that varies (or do they do the same thing every day). During tours, observe. Watch the residents, the staff, and especially the interaction. Talk to the parents of current residents. Talk to different staff and leadership. Are you getting consistent answers? You may not bring your loved one to a long list of first visits but definitely bring them back to your shortlist and gauge their reaction. Inquire about a summer camp or a short-term (1 week or even a couple of days) stay for your loved one to get a feel for the place.
As you can see, this process is not easy or quick, but remind yourself of the WHYs and get started early. This topic, as difficult as it may be to envision, is an important step in. your loved one's independence and essential for their long-term care.
Please check out our book, The Essential Guide for Families with Down Syndrome, which has several chapters covering all these topics in detail. Regardless of which option you choose, it's important to use available resources to find the best option for your loved one.
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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