Boxwood Junction: Creating a Better Future for Loved Ones with Disabilities
By Joan Migton, Boxwood Junction
Families caring for a son or daughter with a disability most times manage to juggle schedules, get to work, put food on the table and get to multiple therapy and doctor appointments. At the end of each day, parents fall into bed, knowing that they have done the best that they can, but still they cannot sleep. The question haunts them: Who will do all of this for my son or daughter when I am no longer able to do it or here to do it?
Parents create plans: siblings or relatives are lined up as guardians, nonprofits that provide oversight for individuals who have distant family or no family are enlisted, special needs trusts are established. But the system they are facing is fraught with black holes, reports of negligence and abuse, rotating poorly trained staff and residences in dilapidated conditions. It is certainly not a world where we want our most vulnerable loved ones to live, especially since we will not be there to provide oversight and advocacy.
Uncertain Future for Families with Developmental Disabilities
Two years ago, I faced this issue head on when my husband of 35 years, John Migton, passed away suddenly in our front yard of a heart attack. There was no warning. One minute here, the next minute gone. And our daughter, Barbara, who was 32 at the time, came home from her work program to find that her beloved daddy was gone. Since Barbara has autism and seizures, she had a lot to process, even if she could tell you that daddy is in heaven with her grandpa and dogs, Sparky and Lucky.
She became clingy and panicky if she did not know where I was, even if she was in the company of her sister, Christine, or her grandmother. Christine and I decided that we needed to find a way to provide for Barbara's future, a way that she would be supported and productive. Unfortunately, we all must face our own mortality and know that in most cases, our children will outlive us. It's not a conversation most people like to have.
John and I had discussed Barbara's future in vague terms, as she was well-down on the list for residential services. We were both in good health, retired from our professions and able to care for her. However, when we received a letter from our state's Division of Developmental Disabilities stating that she was number 700 on the waiting list, we knew that we would likely be getting that call in a year or two, three at most. John was adamant about Barbara staying in our home with us, even if it meant needing an emergency to get a placement in a group home further down the line. Six months after we had that conversation, he was gone.
Boxwood Junction Creates a Community for Special Needs Families
The vision Christine and I have for Barbara's future is a community, a place where she could live with peers, work productively, enjoy social and recreational opportunities and, above all, be supported and supervised by caring people who wanted to live in that community too. Our plan included live-in caregivers, people on the grounds who would assist our residents in their day-to-day activities and help them in a handful of businesses designed for their successful participation. The businesses would create a community that would be self-sustaining, one that would lessen our community's dependence on state and federal dollars.
We all know that residential supports for people with disabilities are expensive, that group homes and supervised apartments tend to be isolating and that underpaid caregivers are often inadequately trained for their responsibilities. We wanted to find a way to do this better and to do it more cost efficiently so that more people could be served and waiting lists with thousands of people on them would no longer exist.
That's when Boxwood Junction began to take form. Christine and I created a board of directors which included friends who also had family members with disabilities, but it also included friends who just wanted to be involved in something new that would benefit people like Barbara. We had several consultants come on board to help out with the logistics of incorporating and applying for nonprofit status and we enlisted a husband/wife architect team who created preliminary drawings and a floor plan that matched our vision.
Boxwood Junction will include housing for 12-16 residents, people who have a disability that qualifies them for Social Security, Medicaid and/or Division of Developmental Disability services. There will also be housing for an equal number of mentors who will support our residents and assist in running the businesses. Some people call this an intentional community, but we think it's more like an inclusive community, one that welcomes and includes people who have a disability as well as those who want to belong to a village where they could have a life of purpose, a life in which they make a true difference. Our mentors can be single individuals, couples or even families with children.
While some communities are agrarian based, neither Christine nor I are any good at being farmers. She is a professional chef, so our vision includes at least one food-based business entity: a sensory friendly supermarket, a catering facility for events or a restaurant/bakery. Other businesses that we could see incorporating into the community would include a copy/shred/print shop, laundry/dry cleaning facility, nail salon, dog grooming, car wash and thrift store. All of these businesses would help our residents to be productive and integrated into the community.
Integrated Special Needs Community Will Evolve to Include Wellness Center and Long-Term Care
In our second phase, we plan on constructing a health and wellness center that would offer speech therapy, occupational therapy and physical therapy to our residents and to the general public. We also foresee having a partnership with an animal shelter so that our residents and mentors can enjoy the company of cats and dogs in their homes. Our final phase would be the creation of an assisted living center where our residents can work and eventually transition to living there when they need that level of care.
In my mind, my daughter Barbara will become accustomed to living in a home with friends and peers. I will have an apartment on the grounds, be able to see her off to work, have dinner with her at night and tuck her into bed. She will know that mom is there for her and feel safe and secure. And when I am no longer walking this earth, she will continue to live in a familiar place, among people who care for her and understand her needs, doing work that she finds productive and satisfying.
While I am striving to create a situation for my daughter's best interest, it will also benefit many others. Our hope is that we can construct a community that can be replicated by other families and embraced and supported by the general public. My husband John had a favorite saying: "We just want everyone to be happy." Our hope is that Boxwood Junction can become a place where that occurs.
For more on Boxwood Junction, visit www.boxwoodjunction.org. If you know of someone with a disability who would benefit from our services, or if you or someone you know would like to volunteer your services, please contact us. We are looking for people with fundraising, business, legal, real estate, or marketing skills who share our vision. Email us at firstname.lastname@example.org.
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