Bill Would Offer Respite for Caretakers of Children Who Need 24-7 attention

Andrew Kitchenman | July 16, 2013 | Health Care
Round-the-clock providers would be regulated by state under measure approved by Assembly

Assemblyman Daniel Benson (D-Mercer)
Parents of children with health needs requiring around-the-clock attention would get some much-needed relief under a bill advancing in the state Legislature.

The bill, A-3558, would require state officials do develop regulations for facilities that provide “pediatric respite care.”

Such care allows children who normally receive 24-7 care at home to stay at the facility while family members vacation or take care of other needs.

Parents who need to take a break must now employ a constantly shifting stream of providers who will work in their homes. This frequently leads to parents having to find last-minute replacements and isn’t effective for longer periods of time, according to Nathan Rudy, executive director of Connor’s House, an organization that is advocating for the bill.

Families “have to make incredible, incredible sacrifices to their own lives and to the lives of siblings,” Rudy said at an Assembly Regulated Professions Committee hearing earlier this year.

Connor’s House was launched by Scott and Deb Millard, whose son Connor Millard lived at home despite being on a ventilator his entire life, Rudy said.

“They were told that he should be institutionalized and that they would never be a family,” Rudy said. “They were unwilling to accept that. They brought him home against a lot of the medical wishes.”

This allowed Connor to enjoy a home life and engage in activities like riding a tricycle before he died in 2007 at the age of 8. Rudy noted that the Millards were under a lot of strain because of the level of care that Connor required, but they were able to handle it with the support of their parents and their church.

“Most families in this situation don’t have that,” Rudy said.

Roxbury Township-based Connor’s House, along with Circle of Life in Elizabeth, is one of the two organizations interested in applying to be regulated under the provisions of the bill, Rudy said. While the organization already provides help to some families, it’s hindered by the lack of state regulation.
While pediatric respite care facilities have been widely adopted in the United Kingdom, they have been licensed in the United States only in San Francisco and Phoenix.

With 12,000 New Jersey children having life-shortening conditions and requiring 24-7 medical care, “My guess is that no matter how many we build, we’ll be underserved,” Rudy said.

Bill sponsor Assemblyman Daniel R. Benson (D-Mercer) said the legislation would allow parents to take a break of up to two weeks, either to take a vacation or to provide for other family members’ needs.

“There are thousands of children here in New Jersey that require 24-7 specialized care. It’s been recognized in recent times that having those children receive the care at home provides better quality of life, not only for the child, but better health outcomes, and better quality of life for their families,” Benson said.

“There comes a time when that burden becomes high, either because of providing for themselves, providing a break in that care, providing some just normal quality time and family time to other children in the family,” Benson said.

Benson said children also benefit, both by receiving different forms of therapy and by spending time with other children facing similar health issues.

The facilities are “not just providing that care, they’re providing a break for the children as well, through art therapy and other types of recreation and activities and, more importantly, also to meet other children with the same conditions and seeing that there is a normalization of care and a socialization, to know that they’re not alone in fighting these diseases,” Benson said.

Benson said that while he hopes insurance companies will pay for the respite care, the facilities will likely rely on donations.

“This is care that’s been provided and paid for by insurance at home anyway,” Benson said.

Benson added that existing hospitals and long-term care facilities that serve children with special needs would also be able to apply to serve as respite providers under the legislation.

“They may look at this, depending on how the regulations are written, and say this is something we could provide,” he said.