DS Independence: Finding the Right Place
Updated: Apr 29
The 5-Step Process to Guide You
In the last couple of blogs, I've described our daughter's move out of the house and into an independent living community for adults with special needs, as well as the initial transition. But certainly, this adventure started much earlier. I would submit that it started decades ago when she was just a kid and we encouraged her to make her own choices and tried to treat her like her siblings so she would have similar experiences and dreams in life.
But this month I wanted to specifically focus on our 5-step process for finding the right place for Gwendolyn. This can happen over years or just months, but I would certainly try to avoid rushing such a critical decision in response to an unexpected change in caregiver status (eg, death or illness of parents). We started our process in late 2019 so it took about 2 years, extended about a year due to COVID lockdown
1. Set Expectations
What does independence mean to you? What do you envision for your adult with Down syndrome? Remember, don't underestimate their capacity or the services of many residential communities. Most importantly, include your child/adult with Down syndrome in the discussion. Their wants, desires, and fears must be considered. After all, they will be the ones to experience the ramifications of this choice first hand and their input and enthusiastic support are critical.
Expectations could include:
Location: are you focusing only near home or is that not a limitation?
Proximity to family: do you want them to be near you or relatives? Will you move to be nearby?
Type: residential living facilities range from dorm-like communities to group homes or even independent apartments with or without a caregiver roommate.
Packages: are you seeking only residential living options or day programs too? Do you want them at the same location? If separate, how long do you envision the commute will be and who will provide transportation?
Amenities: what day program classes are you seeking; eg, educational classes, life skills, work, socials, "camp classes" (eg, art, jewelry, sports, swimming), Special Olympics teams?
Health care: what services do you need for common colds or specific health issues of your adult with DS? Are you looking for a long-term community to "age-in-place", in which case Alzheimer's care and assisted living options may be critical?
Safety & Security: what are your expectations to ensure bad elements are kept off-campus and that residents can't wander off-campus? Does your adult with DS need 24/7 supervision?
Financial: how much can you budget for independent living? How much public assistance can you expect? See my past blog on a wide variety of services and funding that may quite likely be available to you.
2. Develop Your Options
Based on your list of objectives above, develop a list of options through these sources:
Your local Down Syndrome association and/or ARC chapter
Referrals from doctors, therapists, teachers, others in the Special Needs community
Friends and family
Do some online searches to see how options align with your expectations. Evaluate their credibility (years in service, certifications, awards, reputable Board members, fully functional and informative website). Be mindful of red flags that will help narrow your search.
3. Develop a Thorough List of Questions
Arrange to visit and tour those remaining on your shortlist. Include a wide variety (group home, dorm/residential community, community apartments, etc) to consider options and help in evaluating your choices. Develop a list of questions to ask each provider beforehand. Bring a notebook to write everything down and keep it straight. Be sure to ask your adult with DS what their questions and concerns might be. Typically, I would suggest you and your spouse/partner go first and then bring your adult with DS with you on a second visit for those you remain interested in. It gives you a reason to return and it avoids subjecting your adult to all of the emotional roller coasters too early.
Based on each of the 8 expectations listed in step 1
What would a typical day be like for your son/daughter?
How do they provide a safe and secure environment?
What are meal options and limitations?
What form of exercise is offered? Where?
Will there be 24/7 supervision in the home/building?
What is the tenure of staff?
What are weekend activities like?
What is the visitor policy (how often can you visit and do you need to provide advanced notice)?
What is their transition experience and plan for new residents?
Who is the supervisor or house caregiver? What are their qualifications and tenure? Can you be introduced today?
Who selects roommates and house caregivers (esp for group homes)? Is this controlled by the parents, facility, or state-mandated?
Who makes the menu and ensures a balanced diet?
What chores does the supervisor do, residents do, or are handled together?
What is the admission process? Minimal screening may be cause for worry.
Pose what-if questions (eg, what if they get sick, need a doctor, cry during transitions, don't get along with their roommate or supervisor, or if there is a security breach). You are testing their preparation and also their willingness to share along with their communication style.
Can you have a copy of the standard contract for review?
What day(s) does your tour guide typically work (this will come in handy later)?
Can you get the names of parents and Board members that can provide references?
Some facilities will be an immediate "no" and others will be quite exciting. Don't make rash decisions.
The objective is to test the fit.
Does it feel safe and secure?
Can you see your daughter/son happy here?
Does the option appear to strike the right balance of independence and support?
Will your adult remain happy and challenged or become bored here?
Be sure to visit your full shortlist of options. There may be "sleepers" or surprises out there. Sleeping on the decision is always a good choice.
5. Do Your Homework
When you get home, do more homework:
Review your list of expectations and questions. Did you get thorough answers to each?
Call some references and check answers for consistency.
Ask your community (DS associations, doctors, teachers, clergy, etc) about the facility.
Send more questions to the facility contact. Gauge the swiftness and thoroughness of their response. If they don't have time for you now - when they are trying to earn your trust and your money - they surely won't have time for you once you sign a contract and make a commitment.
Review the sample contract and ask others to do so. Are there any surprising requirements of you (donations or time commitments you may be uncomfortable with) or release of liability of them?
Do they offer trial weekends/weeks and/or summer camps?
If you remain interested, schedule at least one more visit and tour. Bring your adult with DS to see everything and gauge their interest, excitement, or fears. Try to schedule with a different tour guide (schedule on the original tour guide's day off😉). You want to see if the vibe and information you receive from different sources align or if it feels oddly different. This tour with your adult with DS also helps make this transition quite a bit more real. It may confirm their readiness or suggest it may not be quite the right time yet.
As mentioned, we tried to prepare for something like this for years. About five years ago Gwendolyn started specifically addressing her desire for independence and moving out - not out of a need to escape, but to mirror the independence of her sister one year her junior and her younger brother who was starting to consider college options. So we sat down with Gwendolyn and drafted her Independent Plan. We began working on steps to help prepare her (doing more chores on her own, writing out steps, getting a part-time job, letting her walk two blocks by herself to work...). This also tested her preparation on tasks and mindset.
In 2019 we felt Gwendolyn was ready. She had been in a post-high school program for adults with Down syndrome for about seven years. She had grown and learned academics, self-care, and independence and she was ready. It felt she was now plateauing and needed some additional challenges.
The Long and Winding Road
So we began the above 5-step process. We saw at least seven facilities in our home city. Some were co-located residential and day programs, some separate; some had them working many hours a day to make products for the facility to sell (it felt like a sweatshop despite that facility's strong reputation); others had warehouse-style day programs with long tables and quiet kids. Some were state-sponsored group homes that had loose guidelines on house caregivers, roommate selection, or healthy meal planning. We saw a variety and our expectations evolved along the way.
Suddenly, six of the seven were "hard no's." One warranted further consideration but didn't feel quite right. We went about four hours away to another big city and saw four more options, one of which we were excited about. We loved the day program but the residential facility was still in the planning stages and would be a 30-minute commute away. Following our process, we later found their response to our follow-up questions was slow if forthcoming at all. Their updates during COVID - a hypersensitive period for everyone - were absent which became a red flag.
Finally, we went to another city about three hours away to check out one last option which had been recommended by the founder and president of her post-high school program. This community met or exceeded all our expectations. They gladly answered our questions and we were able to interact with over half a dozen administrators, teachers, and caregivers, along with the nurse and a Board representative. All activities were located on one campus, home to over 250 adults for nearly 50 years.
We got on the waitlist and took Gwendolyn for a tour once they re-started tours once COVID vaccinations were available to residents and guests. Gwendolyn beamed with excitement and the process thereafter remained transparent and positive.
Of course, even all those steps can't guarantee safety and success. We moved to be nearby. We have email and cell phone details of many staff. We periodically check in with staff and supervisors on Gwendolyn's status and to ensure everything is running as expected. We talk to Gwendolyn nearly every night and see her on campus every two weeks. We watch for any strange signs but we have been thrilled. Gwendolyn is happy, it's the right balance of independence and support. She is busy with art, jewelry, cooking, basketball, and biking all day, and a variety of regularly scheduled meals. She gets along with her roommate, loves karaoke on Saturday, and looks forward to increased independence in the months and years ahead.
This is certainly still a transition for Gwendolyn and for us after 27 years of living together. She's had to break her bonds at her old school and workplace and acclimate to a new city. But she's handling it like a champion with help from her new friends.
I wanted to share our journey and process because this is a huge transition for anyone. I'm a big believer that such independence will help our adults with DS learn, grow, and flourish while instilling a tremendous sense of pride in your child and that, together, you did everything to help her realize her dreams.
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