In The Politics of Autism, I write:
When disabled people reach their 22d birthday, they no longer qualify for services under IDEA. ... People in the disability community refer to this point in life as “the cliff.” Once autistic people go over the cliff, they have a hard time getting services such as job placement, vocational training, and assistive technology. IDEA entitles students to transition planning services during high school, but afterwards, they have to apply as adults and establish eligibility for state and federal help. One study found that 39 percent of young autistic adults received no service at all, and most of the rest got severely limited services.
Clearly, there are problems with the Mom-as-ghost approach; I understand that this is not actually an option. And yet, by paying attention to that terrible longing I have to float over Nat and guard him forever, I came up with an idea that actually has legs. I called my new idea G.H.O.S.T., "Group Home Oversight and Support Team," with the idea that members of the disability community would help out with oversight of each others' disabled loved ones by spending a little time with them.
The GHOST concept soon evolved into "General Help, Outreach, and Support Team" because that name can encompass far more people than those in group homes. Rather than just being about those living in group homes, GHOST could focus on caregivers and family members helping each other out in general but especially when it comes to spending a little time with the disabled loved one.
What is GHOST and how would it work?
It didn't take long for my idea to gain support. In particular, Cheryl Ryan Chan, a good friend and a huge community advocate proposed that GHOST become a subgroup within the Community Builders of Massachusetts TimeBank, which she is still in the process of organizing and launching. In Community Builders Time Bank groups, which exist nationwide, members “bank” time by performing tasks for other members, who would then “repay” this by contributing time and tasks of their own to the bank. For example, Jane visits Andrew in his group home and shares a snack with him. Or Jane goes to the group home to help Andrew with a clothing inventory. This means that now Andrew's family member would now have to donate the same amount of time or more to a member of the GHOST Community. GHOST members donate only what they are comfortable with, but the time they give determines the time they get. Some GHOST members might donate time in other ways in order to get another pair of eyes on their loved one, like looking after a sibling or cutting the grass of a time bank member. In other words, members commit time to gain time. If “it takes a village,” then GHOST would provide that village for families.
