Building Day by Day
Thursday, September 15, 2016
“No doctor can write a prescription for friendship or love.”
Bessel van der Kolk, MD
When you build a bridge you should expect some heavy lifting. Physical or mental, what does it matter? Helping our adult children establish independent lives will make many demands on our strengths, even when we feel some of those powers may be waning. Fortunately, kind hands and hearts appear when they are needed most.
There are a number of reasons why a place like the Washington, DC metropolitan area works well for our self-advocates. It offers more opportunities for employment, social experiences are plentiful, and the robust Metro system allows travel freedom for a non-driver. On the down side, housing is expensive, crime is part of urban life, and competition for jobs is fierce. Oh well, a ship is safe in the harbor but that’s not what ships are for.
Our experiences with Integrated Living Opportunities (ILO) has taught us that instead of just looking for an apartment or a job we need to create an intentional community of support to ensure a full life for our loved one. The full-life model used by ILO is a visual representation of how a self-advocate’s hopes and dreams are realized. The center circle (hopes and dreams) is surrounded by eight circles which represent the various aspects of a full life: wellness, spirituality, friendship, life-long learning, employment, fun and talent, my place, connections and getting around. Support for these endeavors is provided through a combination of family, friends, coworkers, professional support staff hired through private and government funding, and others in the community.
Integrated Living Opportunities is focused on building the infrastructure that supports the self-advocate. ILO does not provide housing. The Integrated Living Opportunities model for housing is community based, not “special” isolated housing where choices are limited. The types of housing arrangements that are community based range from self-advocates renting their own place (alone or with roommates) and having “drop in support” to sharing an apartment with a roommate who is the support. Some families with self-advocates who remain in the family home will strive to have them become as integrated into the community as possible. The type of housing model, of course, has to work for the individual. ILO’s vision is to have the self-advocate live as those without disabilities do, not in a group home where choices are limited.
ILO has a skills inventory that identifies skills that have been mastered, and those that need to be developed and introduced. The recommendations from the Skills Inventory can guide timing of a move from the parents’ home, but more importantly identifies skills that can be introduced and developed while still at home.
During a training seminar that all ILO families attend, we visited two kinds of housing: one was a shared housing option where self-advocates shared a large apartment in a duplex house with a top floor apartment where the overnight support lived, and another where individuals lived in apartments in close proximity to one another and the support “dropped in”. The cost for support help (someone to facilitate social activities or troubleshoot problems, for instance) can be shared by families who may or may not have government funding.
An Intentional Community
This fall, the first group of ILO self-advocates (all young men) will move into new apartments in a building in Gaithersburg, Maryland. The ILO families, along with founder Maedi Tanham Carney, have worked diligently with a developer to secure spaces for these self-advocates.
The young men will be living in their own apartments in the brand new building, and all the units in it are moderately priced. The building itself is in a neighborhood with shops, and it is located on a major bus route. It is across the street from a police station. Living in the same building provides an important opportunity for building peer friendships, as well as a sense of belonging within the other tenants in the building and the neighborhood. This is probably the most important aspect of the full-life model we hope to create for our adult children.
The parents, with Maedi leading the charge, have been the initial community builders. They scouted out places, made the contacts, arranged finances and hired an individual who is responsible for helping the four men build their community.Some members of the community will be their neighbors in the building and others will be in the neighborhood. Some will be paid for their involvement with the self-advocates, others will not. The resources of the members of the “intentional community” will enable the self-advocates to live with dignity, realize their dreams and reach their full potential. The challenge is to help the four men develop a sense of community among themselves and to collectively make connections to others in the building and the Olde Town Gaithersburg community.
Despite our best efforts, there are still concerns. This is normal, because it’s all new. These parents are pioneers. They are fortified by each other, by what they learned in the training, and by the stories experienced family members shared with us both in the initial training and our own monthly meetings. ILO families whose self-advocates have made a successful transition to independent living said it is a process that may take anywhere from six months to two years before parents feel comfortable. Self-advocates who have been prepared and have supports feel comfortable far sooner.
In the DC POD (POD is a term we use to designate ILO families in a specific area in DC or Montgomery County, MD) we have a family with a daughter just finishing high school. A couple of young adults who have just completed or are completing a post high school experience. My own daughter, Rachel, has finished college and is seeking employment. My husband and I decided to get involved with ILO so we could begin the process while we still have (hopefully!) the strength it takes to help Rachel build her bridges to the future. The DC POD is currently exploring options for housing and the parents meet regularly to put their heads together.
In the DC metropolitan area, with its abundance of opportunities, we have to think about choices for socializing. Researching and contacting people take time, but it’s part of finding a good fit. As they told us in our training, stable social connections are important for happiness, growth and safety. Self-advocates in our Maryland and DC PODS are active in their communities through Special Olympics, Potomac Community Resources, faith based organizations, recreation departments, and other non-profits devoted to offering social opportunities to individuals with intellectual and developmental challenges. This is an area that has lots of opportunities!
My daughter Rachel, new to Washington, DC, reached out (with my help) to the DC Jewish Community Center. It has lots of the target activities: gym, pool, learning and social opportunities, including “Entry Point DC” for young adult newcomers. We met with a manager and brought up one of the ideas we had learned in the ILO training: In a social situation, could a popular member of the group act as a bridge between a newcomer who needs support and the rest of the participants? Sort of a “Friendship Circle” (a program for school age children with special needs) for young adults? The response to our proposal was enthusiastic and a follow-up meeting was scheduled to explore how that might work.
A Model for the Future
A longing for community exists within America’s broader population. Many chronic illnesses are attributed to the stressful conditions of modern life, which includes a sense of isolation. Can our culture move away from its materialistic definitions of success toward a cooperative model that shares resources and social capital more equitably? As Al Etmanski says in his book Safe and Secure, “All the riches of the world will not compensate for the security of being cared for. That’s what parents do. That’s what friends are for.” Working together with a shared vision is the only way to build the bridge to a caring future. This is what ILO is doing.
Would you Like to get Involved?
Thanks so much for taking the time to visit our website today – and a big thanks to ILO participating family member Barbara Goldschmidt for and Debbie Fickenscher for contributing this informative and inspirational article. On behalf of Barbara, M&L staff and all ILO members, we hope that today’s post was able to inspire you to dream and reach for a successful future for your family with special needs. If you are interested in learning more about ILO or intentional communities, please do not hesitate to contact the organization directly.
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