We autism grandparents, due to our ages if nothing else, are likely to have a much better appreciation for our grandchildren’s single most significant lifetime challenge than do their parents. The challenge is how to have a support system for their adult lives including after their parents and siblings are no longer around.
Just recently I attended a meeting of a small group of special needs professionals, and when this subject came up I said I wish there were a silver bullet. One of the professionals responded that there is one, “microboards,” and that she had recently been helpful in establishing some.
Microboards for special needs persons are relatively new, and have begun to become more recognized over the past decade. Law firms and financial planning firms are beginning to introduce their clients to the concept.
A microboard is essentially a group of persons who, together, take on the responsibility of doing what is necessary to help a special needs person have a fulfilling life based on that person’s aspirations, likes and dislikes, and available resources.
A microboard is a legally incorporated nonprofit entitiy, members are not paid, and the special needs person is a member of the microboard. The microboard’s fundamental responsibility is to create and implement a life plan for the designated person. The microboard adds and/or subtracts members as needed. The membership typically consists of from 3 to 10 family members and close friends. As a board member, the designated person’s voice and opinions have priority attention. Microboard members not only provide their own skills and networks, but also tap into those of their community connections where they have influence.
The one very obvious advantage of a microboard is that it is established to be fully functioning and attentive throughout the designated person’s entire life. Parents no longer have to wonder what will happen or who will make decisions regarding caretaking etc. after they die. A group of dedicated, loving, attentive persons will always be in place to assure that the person’s life is the best it can be.
My five-year-old autistic granddaughter’s parents have too much on their plates right now to worry about what will happen 15 years from now. But I, like all grandparents, know that small children do grow up and do need support systems.
Perhaps we grandparents can take the lead in introducing the concept of “life planning” to our grandchildren’s parents.
Are microboards silver bullets for persons with special needs? Since they are so new, we won’t know the answer until they’ve run their course with a lot of persons.
But there is an analogy that I am very familiar with: boards for 501c3 nonprofit organizations. These organizations became popular after the passage of 1960s legislation that required arts organizations to have 501c3 status in order to apply for federal grants. Today of course there are a zillion 501c3 organizations for all sorts of charitable endeavors and all of them are required to have boards of directors. Each board’s responsibility is similar to that of a microboard: provide oversight in determining and implementing a plan. The theory is of course that a board of directors is just the thing to assure that an organization is strong and worthwhile and adhering to best practices.
Now that a half-century has passed since the proliferation of 501c3s and their boards, we know that boards, in themselves, are not silver bullets. In fact, almost all executive directors of nonprofit organizations can point to ways that their boards can be counterproductive and even detrimental.
Following are six challenges that 501c3 boards face - challenges that I suggest that microboards may also face.
STAFFING THE MEMBERSHIP Someone has to keep the board members engaged both emotionally and physically. This takes ongoing, person-by-person work. Being on a microboard - like being on a 501c3 board – is a volunteer activity. There is a tendency among all of us to be cavalier about our volunteer activities and see them as far less important than things in our “real” lives.
“PAPERWORK” An incorporated microboard is required to submit federal forms, document all sorts of things, send and receive communications, keep minutes of board meetings, etc. etc. There is a need for constant, ongoing work on the keyboard and the telephone. Once a 501c3 organization gets behind, it can be almost impossible to catch up.
KNOWLEDGE Who on the microboard will have the responsibility of investigating housing? School systems and IEPs? Free public services? The learning curve regarding special needs persons is steep, complex, and never ending.
MONEY When there is a need for money, what is the source? Who determines/approves expenditures?
BOARD MEMBERSHIP Who should be on the board? Who are prospective board members and what is the recruitment process? What if a board member isn’t good? What about board disagreements? (Experience has taught me that it is risky for a 501c3 organization to add any new member who hasn’t first demonstrated three years of love for the organization.)
LEADERSHIP Nonprofit boards are only as good as the leadership of the nonprofit organization. Certainly the same will be true for microboards; the leader will indeed set the pace and establish the tone.
Right now (2021) the concept of microboards is relatively new and filled with hope. Conceptually a microboard can help assure that my granddaughter’s entire life will be fulfilling, and that she will always be surrounded by persons who love her and are attentive to her needs.
Let’s hope that that is indeed the case for microboards. But regardless, we autism grandparents can consider taking the lead in introducing the concept of a life plan for our grandchildren.