For those of you who joined the Beyond Down Syndrome journey a while ago, you may know our daughter, Gwendolyn, now 29, achieved her long-time goal of moving out of the family house a couple of years ago. I've chronicled her progress in building independent skills, our search for the right independent living community, and our transition in 2021 through many blogs. Now I'd like to share a bit more about our family's choice - Marbridge - with the hope it may help you find your own self-advocate's future home.
About ten years ago, Gwendolyn came home from school and exclaimed, "I want to be independent!" This was quite profound for any 19-year-old and changed our trajectory. We spent hours exploring her definition of independence. She listed continuing education, work, relationships, making good choices about her body, and moving out. Though we feel we are pretty progressive parents, we realized we had never really had such a conversation together. We had not asked her what SHE wanted as a young adult.
I believe we changed our parenting style at that moment. We realized we needed to practice Person-Centered Planning. Gwendolyn's dreams and her concerns needed to lead our decision-making - not just about where she lives but all facets of her life.
So, together we made detailed steps for her to achieve her various goals. We used checklists, role modeling, and practice for her to develop better hygiene skills, to find a job, to develop vibrant relationships, and finally, in 2019 to evaluate home living options.
Home Living Process
In late 2019 we had a family discussion and agreed Gwendolyn was ready for perhaps the penultimate step - to move out of the family home. Our next step was to identify what she really wanted in her new home. She listed things like:
Independence to make her own choices
A wide variety of activities including arts & crafts, basketball, cooking, and writing
Healthy food and exercise options
Friendships with like-minded people
Mom and Dad added several more:
Safe and secure campus
Minimum commuting between home, activities, and work
High level of communication and transparency
Long-term, sustainable living
Once we had our criteria, we began to develop our shopping list. We talked to friends, and various special needs organizations, and Googled some more in our hometown of Houston, Texas. We discovered a wide variety of options including:
Independent apartments, condos, houses
We found in our large city there were at least 15 options. We first did online and word-of-mouth research and then we began to visit each. We built our list of questions and we toured for months.
Finding the Perfect Right Place
I must reiterate that there's probably no "perfect" place and, perhaps more importantly, every family may define that "right" place differently. It depends on your self-advocate's skills and interests, location, options, financial standing including Medicaid Waiver status, intuition, and more. I encourage you to talk to many, ask lots of questions, and then reflect as a family. Having your own list of criteria before you go "shopping" is very helpful to ensure emotion doesn't rule the day.
Our Narrowing Process
For us, after visiting many types and styles, we concluded:
Group homes were not ideal. We could not select the in-home caregiver, the roommates, the menus, or the schedules. Too many variables were out of our control.
Independent apartments just didn't fit Gwendolyn's criteria. It demanded more independence than we were comfortable with and made coordination with work, activities, and social groups complicated.
Community living generally fit our interests. They provided the independence that fit Gwendolyn's interest and skillset and many had activities, work, and residence on the same campus. So we focused on the many options in this area. We found a significant difference among this category. Some red flags appeared - a few resembled adult babysitting, others felt a bit like slave labor (required work hours), and still others only offered housing. For those that appeared to meet much of our criteria, some had more experience and stability than others. Doing our homework was certainly critical.
As mentioned, we visited about 15 places in Houston. Most were communities of some sort. Surprisingly, we only found one that seemed to check most boxes. Others didn't offer the activities, security, or coordinated location we were looking for. Some didn't put off a positive vibe that would give us comfort for our daughter to be in their hands 24/7. We were a bit frustrated.
Perhaps it was oddly fortuitous, but COVID hit just a few weeks later and we put our search on hold. When we resumed a year later, we realized our youngest was now approaching high school graduation. With my wife and I semi-retired, we decided to open up our search to other locations in Texas so we made trips to the Dallas area and then to Austin. We discovered a couple of interesting options in Dallas; not perfect but definitely shortlist options. Our very last stop was Austin. We had seen Marbridge right before COVID and when we returned a year later, we knew it was the right place for us.
The Marbridge Difference
Marbridge checked all our boxes. It is a campus community with 275 residents from ages 20 to 80+ with a wide range of cognitive disabilities. Residents choose 4-classes per weekday including jewelry, art, basketball, swimming, equestrian, writing, hygiene, Special Olympics, and more. About 100 of the residents have jobs either on- or off-campus. All residents have many opportunities for day trips to go shopping, to the movies, to local sporting events, camping, and more.
We also like the variety. Residents choose their classes on a semester basis so they get to change classes every 3-4 months. Similarly, the meal menus continually change so they aren't eating cereal, hamburgers, and spaghetti every day.
We discovered that Marbridge is one of only 3 residential communities that offers lifelong care including three styles on the same campus:
Independent and semi-independent care in lodges
Assisted living in dorms and lodges with 24/7 caregivers
Skilled nursing care with top-flight facilities and healthcare staff.
Gwendolyn is currently enjoying her Assisted Living lodge including her own room, shared bathroom with her suitemate, and plenty of shared social areas for the 12 residents of her lodge. She also has the opportunity to move to more independent living as skills develop and to utilize skilled nursing if needed as she ages at Marbridge.
What Sealed the Deal
What sealed the deal for us was the care, compassion, communication, and longevity at Marbridge. During COVID nearly all the other places we visited went silent. Marbridge actually heightened their communication and transparency...and we were only prospective parents at the time. They openly communicated about COVID cases and adjusted their resident and visitor policies as necessary. Amazingly, not one Marbridge resident had to go to the hospital to address COVID issues.
We are also so impressed with the care and compassion of the caregiver staff, teachers, and senior executives. They know all the residents and take a genuine interest in their well-being and care.
Marbridge even hosts a free symposium every year for other residential living communities or projects to help share their magic formula and assist others in helping to meet the growing demand for quality communities across the country. Several leaders including CEO Scott McAvoy attended our Essential Guide book celebration this past spring and continue to support many other initiatives that are helping the intellectual/developmental disability community to learn and grow.
In November Marbridge celebrated 70 years of service. They clearly recognize their role in the US I/DD community and so many others across the nation recognize their high level of care. Currently, residents come from 28 different states and five countries (US, Canada, China, Italy, and India). Many of these residents are remote from their families while others have outlived their parents and siblings. We chose to move to Austin so we are nearby and see Gwendolyn regularly.
The Choice is Yours
Obviously, the choice of where your loved one lives now and in the future is yours. It is a quite personal decision. This generation is the first that will outlive their parents. Still, we've found as we facilitate independence workshops around the country that housing is the most difficult topic. Many families, including our own, assumed our loved one with Down syndrome would always live with us. We had a degree of shame in considering anything else. But three considerations changed our approach:
Forward Planning: understanding that at some point my wife and I would not be able to care for Gwendolyn, we didn't want an emergency to spur the need to find immediate housing preferring, rather, that the whole family could be part of a systematic process of evaluating and deciding on the best option.
Out From Under the Protective Umbrella: like her younger siblings, we recognized she could live, learn, and thrive outside the parental protective umbrella.
Person-Centered Planning: we realized this was Gwendolyn's wish and dream and she, like all of us, deserves the opportunity to be involved in the most important decisions affecting their lives.
You may consider Marbridge. You may discover great options in your backyard. Or you may explore creating a great solution with others in your community.
I encourage you to put independent living on your family's radar. Get more steps and tips on our website and in The Essential Guide for Families with Down Syndrome. Take your time to discuss and consider options. Go tour. And be sure to enlist the participation of your loved one.
Start making your loved one's possibilities a reality!
I'm thrilled to announce 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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