By Adrienne Benjamin and Arlene Reith
We are two moms who met recently and although we are different in many ways — one a Republican and one a Democrat — we share a deep bond.
Our daughters, Sarah and Zoe, have never met but have a lot in common. They are 21-year-old women who have severe intellectual disabilities and autism. They just graduated from their school programs. But their graduation has not brought celebration.
The lack of a state budget is not an abstraction for our families. It means no funding for the daily program our girls urgently need. The Department of Developmental Services offers programs with structure, activities and goals to work toward. Our daughters are among the 330 new graduates who are waiting for the funding of these core services. They have waited more than two months so far.
As moms, we share in the despair of watching our girls regress. We watch them become disoriented because the structure they enjoyed at their schools has disappeared from their lives. We watch their boredom turn to anger, anger they can’t express through words, because neither of them can speak.
Zoe’s having temper tantrums, her sleep is disturbed, she’s destroyed furniture and, worse, is hurting herself. Last week, she broke a window. Sarah is becoming less social. She is isolating, avoiding her siblings, only choosing to spend time with her parents. It seems she pulled all this loss and confusion inward and has shut out all the successes from years of school and community inclusion. We try to give them structure and keep them safe. Mostly, we fear for their future.
We also share another fear. The only program currently offering some help to our families is at risk of not being funded. Community First Choice is a cost-effective federal and state program that provides in-home caregivers for people with severe disabilities. These caregivers can assist at home and enable parents to work, while bringing our girls out into the community. With no funding for new grads and a growing residential waiting list, Community First Choice has become the only source of funding to help people with intellectual disabilities.
We both serve on the state Council on Developmental Services and have a pretty good sense of the immense challenges facing DDS. The private nonprofit agencies that serve the vast majority of DDS family members are starving for funds. We are aware of the many complex and controversial issues involving DDS, including the problem of excessive overtime costs. It is important to remember that those overtime costs reflect employees working an exhausting number of hours caring for vulnerable adults who cannot be left alone. We agree that this issue needs to be addressed, however our immediate concern is the 330 new graduates who need funding now. It would be unprecedented if 21-year-olds are excluded from receiving these DDS day services.
We have been to the state Capitol and testified at hearings about the needs of DDS families. We’ve met with legislators many times in the last year. We’ve introduced our daughters to them.
Hundreds of DDS families have been at the Legislative Office Building, telling their stories. The legislators we’ve met are kind and compassionate. They take the time to listen and seem to care. Yet, we’ve gone 75 days without a budget and no funding for our kids.
We know the challenges facing our girls, Zoe and Sarah, and we see their responses to being without the programs they need — Zoe, whose anger erupts outwardly, and Sarah, who shows her loss and confusion by withdrawing inwardly. Despite their contrasting reactions, they are clearly “speaking” the same message. They are like their two moms, one a Democrat and one a Republican, who joined together to speak the same message: Pass a budget that funds the crucial DDS day funding our children need to get their lives back.
Adrienne Benjamin lives in New Britain. Arlene Reith lives in Salem. Both are members of the state Council on Developmental Services, of which Benjamin is chair.