Because my son’s summer program is so small, it is (thankfully) in regular session, despite the fact that Illinois is only partially reopened from the Covid-19 shutdown. I’m grateful to the wonderful professionals at the Carmel Montessori Academy and Children’s House because not only do they keep my son and his classmates outdoors a lot and away from screens all day, but because they even manage to sneak in a bit of fun and creative academics. Some days, the children listen to classical music and illustrate the pieces with crayons and paint. Some days, they write and perform their own plays. Sometimes, they go out on field trips and meander through open spaces, while looking at nature. And sometimes, they bring bits of nature back into the classroom for closer observation. Currently, they are waiting for a monarch caterpillar to form its chrysalis and start its journey to butterfly-hood. Yesterday, they dissected a flower and looked under a microscope at its various parts. Even my son, who is not keen on doing “schoolwork” during the summer, had to admit that it was cool to see what pollen looks like magnified. Examining things under a microscope, which is “cool” for a preteen, becomes significant for a college science major, and critical for a professional scientist. The further along you go, the more important it is to understand a thing in detail.
Which is why the second step after visioning—or perhaps I should say the second, third and maybe fourth step after visioning—is to look at those future situations in detail as if under a microscope. When you examine flower parts under the microscope as an elementary student, you learn to identify the parts of the plant. When you look again as a college student, you can understand what each part contributes to the life of the plant. But as a professional, you can use that close examination to breed a more beautiful, aromatic, useful, or sturdy plant. The goals for closely examining the future vision(s) of your family member with a disability are similar. You want to identify all the people, entities and components that need to be part of the vision, and what each of them needs to do for the vision to succeed. Then you need to work with each of those parts to maximize its contribution and make the vision as beautiful, practical, and sustainable as possible. For example, suppose your family member with a disability envisions her/himself living with one or two friends in an apartment or condo, having a job, having a pet, exercising at the gym, going out on weekends, and taking one major vacation a year.
What people, entities and components does your family member need to realize this vision? To find a home in a suitable location, you may need a realtor. If physical accessibility is an issue, you may need a contractor. To determine the proper ownership structure, you may need an attorney. If your family member does not already have all the independent living skills to cook, clean, do laundry, shop for healthy food, budget and pay bills, then you will need people to teach those skills now and need people to provide support to use those skills on an ongoing basis. If your family member has not already chosen and invited her/his potential roommates, you need to find people who are compatible not only in terms of personality and lifestyle, but also in their desire to move out independently. If your family member does not already have a job, you may need business contacts within the community and/or an agency that provides job coaching and employment supports. You need a contact at your local pet store or shelter to find the right companion animal and a vet to help you keep your new pet healthy. You need to find a gym that is close by and perhaps an experienced personal trainer to keep that exercise regime interesting. You may need social groups or clubs to provide weekend opportunities. For all of this, you likely will need paid staff to provide the support that family and friends cannot always provide, particularly as they age.
Locating and maintaining useful connections with the people and entities (described above) requires what a good friend of mine, a lifetime advocate, calls “social capital”. Building social capital requires both a lot of work and a long lead time. You begin by adding one new person to the circle that knows and cares about your family member. That person brings her/his expertise, skills and, perhaps most importantly, her/his own connections and places where s/he has influence. Then that person who is no longer new, can refer another person or two. And so on. One model for building social capital is illustrated by what is called a “star raft”, a formation in which a number of sailing boats anchor together in order to share resources or activities. You can read more about the Star Raft model here: https://thestarraft.com/. For Illinois readers, the ARC of Illinois and the Illinois Council on Developmental Disabilities have initiated a six-month series of introduction and coaching on the Star Raft model. For more information, email me at alexandra@coyjllc.com.
Sustaining an attractive and durable life for your family member with a disability also requires a very real and substantial amount of financial capital. Although it can be intimidating, it is necessary to sit down and assign a cost to every element of your family member’s desired life for each remaining year of her/his expected life. You need to forecast a reasonable annual budget for household expenses including rent or mortgage, homeowner’s insurance, utilities, food, clothing, personal care, recreation, transportation, health care, and the like. On top of that, though, you also need to budget for the paid support, including case workers and others, who provide oversight and assistance while navigating the disability service delivery system, and perhaps therapists and counselors, who will help your family member with a disability navigate the transition to more independent living and the challenges s/he will encounter on an ongoing basis. Most importantly you must take into account an appropriate cost for the direct support professionals, who will be helping your family member on a frequent, if not daily basis, with very personal aspects of their lives. These are the people to whom you will be delegating some of the work that you have done for so long, so you want to attract good people who will stay by paying a living wage and providing benefits including health insurance. Dissecting a flower is a painstaking process. You have to separate each element carefully and focus the microscope well to see what you need to understand. If you apply a similar degree of care and focus to planning, your family member will have a robust and clear plan for a secure future.
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