Editor’s note: This commentary is by Samn Stockwell, a poet and educator from Barre.
We walked into a room with gray walls and a drain in the middle of the room, empty of furniture. It was full of adults with what used to be called mental retardation, but is now called intellectual developmental disorders, or IDD. For most of their lives, these adults had been confined to these rooms. As part of my work, we were helping to close institutions that warehoused those with IDD. It seemed an unqualified good, closing those institutions. When Brandon Training School closed, I cheered. Yet, I now see adults with mild intellectual disabilities homeless and struggling to parent their children. Where is the promised support?
Having a diagnosis of IDD does not tell you anything about a person’s sense of humor, their interests, or their ability to be compassionate. The diagnosis tells you nothing about whether someone is introverted or extroverted, athletic or sedentary. It certainly doesn’t tell you about their capacity for work or friendship. What it does mean is learning is harder, particularly understanding abstract concepts, complex processes, and making inferences.
To receive a diagnosis of IDD, you need to have an I.Q. of 70 or below, and significant impairment in social skills, adaptive skills, and conceptual skills. In the 1970s, the I.Q. criteria was 80, which enabled many people to receive help in finding employment and housing. Overnight many people were no longer qualified to receive supportive services. Life has not become less challenging since the 1970s. Employment is not easier to find, housing is not more affordable, and health care is not easier to navigate.
In a previous job, I met families struggling with their own intellectual disabilities and raising their children. One family had four children. One parent had a long history of being sexually abused and was very traumatized. They were perpetually involved with the Department for Children and Families for neglect and abuse of their children, and eventually lost custody of all the children. They did not understand the plans DCF developed for them.
One parent received a monthly visit from a community agency. Agencies providing services to individuals with IDD are limited by lack of funding. Not everyone that qualifies can get services: until the age of 21 services are guaranteed by special education law. Adults have no such guarantees.
Other agencies help. What it meant for this family was a confusion of people offering different services when what they needed was consistent assistance. They could read, but not understand, the forms they received from different agencies.
The process of terminating parental rights is at best agonizing. The state must prove its case and must ensure the rights of all parties. Evidence of neglect and/or abuse must be established.
For parents, it means recounting their failures. For the children, they may be separated from their siblings, living in a different community with a new school or child care. No face or routine is familiar to them. When they would most benefit from stability and consistency, they may be moving from home to home, and town to town.
It’s possible to see the love in the parents and to see they cannot care for their children without supports. Parents with IDD can be excellent parents and vital members of the community with the right supports.
Good child care is important. All parents can call or visit child care information specialists to find child care, but it’s difficult to understand how the service works. To apply for a child care subsidy to help pay for child care, the basic form is six pages. If applying for one of the specialized categories, there are supplemental forms. You may be eligible at 100% of the subsidy rate, but actual child care programs usually charge more than the subsidy rate. You may be awarded a subsidy, but there are no vacancies in any qualified child care program. This is confusing without being an individual with a cognitive impairment.
Families I have met with IDD are often homeless because they didn’t have enough money to pay the rent, because the housing they have found is condemned, or because they have let everyone they know move in and been evicted. They can apply for housing help if they successfully complete the paperwork.
Affordable housing is scarce. How often does a family have to be homeless to have supported housing? How often do families have to go hungry before they get assistance with budgeting or a representative payee? Which Vermont children benefit from being homeless and hungry?
Young children are in critical periods of development. The care they don’t receive has lifelong debilitating effects. Research bears out the effects of neglect on development. Children under 2 may bounce back when placed in a responsive environment, children over 2 may not. If supports could stabilize the lives of parents with disabilities, wouldn’t the investment be worthwhile?
It’s no one’s fault the support hasn’t materialized. It’s not the fault of the local agencies; they are doing their best within their budgets to serve their clients, but it’s everyone’s tragedy.
