LACONIA — Arianna Johnstone, who will turn 21 next year, has begun planning for her future. She has assessed her life as she lives it today, named those closest to her and taken stock of her strengths. She has pictured her dreams and confessed her worries while specifying what must happen to fulfill the first and dispel the second.
But, Arianna's aspirations hinge on funding for the developmentally disabled, which is once again at risk in the biennial budget process. She lives with a rare chromosomal disorder — "Dup7Q11.23" — which stalled her learning at that of a 7-year-old, left her with impaired hearing poor eyesight, slack muscle tone and no power to speak. She is not fully aware of her physical surroundings and the dangers it poses for her. She is immune to the most severe physical pain.
Arianna has prospered in the Laconia school system, where she is well liked by students ad teachers alike. She spends the first part each day at school and between 2 p.m. and 4 p.m. enjoys an extended day with a one-on-one aide before spending the last hour of her day at the Boys and Girls Club of Lakes Region. Against long odds, she learned to read. She is an eager player on the unified sports teams and Special Olympics. A skier, she paid for her boots and skis with what she earned working two hours a week for Easter Seals.
"She is active and always willing," said her mother, Valerie, "definitely a popular person."
Next July, when Arianna turns 21, she will no longer be the responsibility of the school district, but will join other children with disabilities in similar circumstances around the state on a list waiting for services from one of 10 area agencies. Chris Santaniello, executive director of Lakes Region Community Services, the area agency serving the region, said there are nearly 700 young adults with disabilities in circumstances like those facing Arianna, 31 of them in the Lakes Region.
Last month, the New Hampshire House of Representatives stripped more than $27 million and forwent an equal amount of federal funding for developmental services from the 2016-17 biennial budget. In particular, there would be no funding for those, like Arianna, on the waiting list. The prospect of being denied services fills Johnstone with dread.
"Ari cannot be left alone," said Johnstone. "Safety is a huge issue." She recalled that Arianna placed a hand on a hot stove, jammed a hand in a car door and fell on her face, shattering her teeth, unaware of the harm she suffered. "She doesn't understand about strangers and if she were left at home alone, she would let anyone in," she said. "Or the house could catch fire. If she got lost, I don't know how we'd find her."
Both Johnstone and her husband, Steve, work work full-time to support their family. She said that without services one of them would have to quit work to care for Arianna at home. "We will always support her. We have always supported her," Johnstone insisted. "But, it would financially ruin our family." Johnstone also feared that without the services that have enabled her to live to full extent of her abilities, Arianna "will lose that happiness that keeps her always active and always smiling."
A briefing paper on the impact of reduced expenditures for developmental services, prepared by the New hampshire Department of Health and Human Services, warned that children would suffer "medical function and behavioral regression as well as significant risk for personal harm" without support services. Parents compelled to leave work, could turn to other state benefits like cash assistance and food stamps and those who lose health insurance through their employer could enroll in Medicaid.
Johnstone said that she intends to do all she can to persuade the Senate to restore funding for developmental services to the budget.