Young Adult Placement Process Still ‘Gaping Black Hole’

First, the happy outcome:
Abby, a medically fragile 20-year old with complex needs, has successfully transitioned from Cedarcrest
Center for Children to a medical group home for adults at Crotched Mountain in New Hampshire.

Now, the stark reality: It took six years to find an appropriate setting, and it is the ONLY one of its kind in New Hampshire.

This story’s happy ending was due in large part to the persistence of Abby’s mother. The team at the Keene, NH pediatric center said Karen advocated, begged, cajoled, negotiated and mediated with a web of state agencies and organizations.

Abby went to live at Cedarcrest at age three after a health crisis. She was medically fragile, dependent on gastroenteral tube feedings for nutrition, needed round-the-clock nursing and was unable to walk. She also had complex developmental needs. Her life expectancy was uncertain, and her family’s main concern was ensuring the best possible quality of life.

Seventeen years later, with advances in medical treatment, exceptional medical support, diligent therapy, and consistent routines and expectations each day, Abby’s G-tube has been removed and she has learned to walk, unlike many children with severe neurological impairment.

Those huge milestones brought new concerns about her future care and safety.

Cedarcrest staff and other transition team members began a multi-year planning process for Abby’s future. As they explored housing, education and service options for young people with complex needs they discovered that no age-appropriate group home, foster care or individualized service option in the state provided the level of ongoing medical oversight and round-the-clock personal supervision Abby needed, and no single agency coordinated the complex funding and legal issues for life care for severely impaired younger adults.

“It was scary. A parent’s biggest fear is that there will be no one to take care of their child, and there was this gaping black hole between pediatric care and adult care,” Karen said. The family also wanted Abby to live with people her own age. Since Cedarcrest was a two hour drive from their home they also hoped for a closer location.

“We had to compromise,” Karen said. Reluctantly the family considered a geriatric nursing home with a young adult unit, and even looked into facilities for patients with dementia and Alzheimer’s, since the level of care closely parallels what Abby requires, but none provided everything she needed.

Just when the outlook appeared bleakest, Crotched Mountain Foundation of Greenfield, NH announced the opening of the state’s first medically-supervised adult group home. At age 20, even though she had not yet “aged-out” of Cedarcrest’s pediatric services, Abby’s family allowed her to become the first of five residents at the customized ranch-style home.

Unlike typical community-based group homes, Abby’s is overseen by an RN program manager, has “awake” overnight staff, and provides on-site medical services.

“Abby is thriving. It is still scary for us, because we are both adjusting to new staff and a different situation, but I am confident Abby will live safely and as independently as she is able with exceptional care and the supervision she needs,” Karen said.

Crotched Mountain is still a two-hour drive from the family home.

“It’s a struggle, it’s never the best, but it’s the best it can be,” said Karen.

Learn more about Cedarcrest Center for Children at www.cedarcrest4kids.org.