A community is a group of people who live together or who share a common culture or interest or characteristic.
The Help A Little One Foundation is dedicated to the community of children so devastated by neurological disease or accident they are unable to perform the routine activities of daily living.
When our daughter Sarah joined that community nearly 23 years ago, Gayle and I became aware of just how disenfranchised these helpless children are, and how overwhelmed their families are just caring for them.
We founded H.A.L.O. to make their lives happier and easier. Our expanding Family Circle programs strive to create a warm, accepting environment and constructive activities for children who are isolated because of their complex conditions. H.A.L.O.’s Children’s Advisory Network speaks up when a regulatory party wrongly denies services. We continue to seek new ways to enhance life for these children.
Thank you for your continued interest and support of H.A.L.O.
A volunteer cuddles a baby with complex medical issues at Seven Hills Pediatric Center.
The women are part of the newly-formed Kuddler’s group at the Groton, MA residential home. Eight volunteers regularly hug and rock the youngest of the center’s 83 residents, who have severe physical and cognitive impairments.
“As Director of Admissions, I have seen an increase in infant and toddler referrals, said Jen Amadon, MSN, RN. “We recognized the need to provide age-appropriate individualized attention, so I reached out to Boston Children’s Hospital for information about their volunteer programs, and a group of us built our Kuddler’s group from there.”
Maureen, retired from an insurance agency and mother of staffer Beth Spinelli, had already been doing arts and crafts with older children at the center when she became the first Kuddler. Her friend Carla, retired from MIT’s Lincoln Labs, joined her; together they recruited friends and the group has been growing ever since.
|Carla and Maureen
Carla said growing up with a sister with complex needs heightened her compassion for people with disabilities, so she’s comfortable holding a baby who may have a seizure at any moment, and doesn’t panic when he keeps popping off the moisture exchanger that keeps his breathing tube clear. “But I understand it’s not for everyone,” she said.
Both women say the key is seeing beyond the complex needs and reaching out to the child inside.
Krista Shell, RN says personal attention “makes a huge difference” to all the residents, but especially the babies who are just learning about the world. For more information about being a Kuddler, contact Kim Boivin at firstname.lastname@example.org.
|Family Circle ‘Social Network’ Is Growing
The Sunday Swim and Sing in Newton, MA continues to serve 20 individuals ages 5-34 years on 30 Sundays a year. A companion program has been provided in Stoughton (south of Boston) for the past three years, reducing the long commute for 10 individuals on 20 Sundays. Both programs provide three hours of 1:1 attention in movement, music and the pool. They are professionally managed by Caitlin Bohara, program director at Jewish Family & Children’s Service (JF&CS) of Greater Boston.
“Most importantly the programs provide opportunities for children with severe disabilities to enjoy their neighborhood community centers alongside other members of the community,” said Caitlin.
“The families really appreciate that social opportunity for their children, because few activities are available for them outside of school.”
Staffers are assigned to a specific “buddy” and invest a lot of time learning how to help the mostly non-verbal, non-ambulatory individuals get the most out of the program. The time and effort needed to build those relationships limits how many individuals each program can serve, Caitlin said.
Because there are 64 individuals on the wait list, H.A.L.O.’s board recently voted to permanently fund of the Stoughton program and added a three-year trial of an additional program for 10 individuals in Newton. H.A.L.O.’s support was instrumental in obtaining a grant for a Family Free Swim opportunity on 10 Sundays a year, also in Newton. The free swim allows five or six families to enjoy an activity organized to accommodate their child.
“It has become an important social network,” said Caitlin. “I notice the parents talking to each other, sharing resources and making plans to get together outside of the program.”
JF&CS also publishes H.A.L.O.’s Family Circle newsletter every other month to inform families about programs and resources for children with severe neurological impairment.
To learn more, email Caitlin at email@example.com or visit www.halo.org.
Rebecca Dalpe, Esq.
“When a regulatory body denies benefits children are legally entitled to, we help families challenge these decisions,” says Rebecca L. Dalpe, a partner at Foster & Eldridge, LLP in Cambridge MA, and H.A.L.O.’s most active volunteer lawyer.
Becky has focused on filing appeals when the state’s Department of Public Health (DPH) has denied short term respite stays at nursing homes. CAN services are currently available only in Massachusetts, where the DPH’s Medical Review Team (MRT) typically makes decisions based on medical records or past conversations.
“Our job is to highlight the pertinent medical records and to obtain supporting letters from medical providers to clarify misunderstandings that may have led to denial of services,” she explained.
Many families are overwhelmed by their child’s disabilities or they find these quasi-legal issues too complex to deal with on their own. Sometimes language or cultural mores interfere with understanding, or families fear that an appeal will cause termination of other services, Becky said.
“It is important to get out the word that H.A.L.O. CAN is here to help navigate the system. In addition to helping families appeal decisions regarding expensive medications and medical devices, we can assist with guardianship and other complicated paperwork.”
Becky’s law practice includes medical malpractice defense, health care law, and representation of medical professionals before regulatory boards, agencies and committees. “My pro bono work for CAN on behalf of families is incredibly gratifying.”
Becky has earned the AV Preeminent Rating, the highest rating for Ethical Standards and Professional Excellence from Martindale-Hubbell, the international rating directory, and has been repeatedly named a Massachusetts “Rising Star” and “Super Lawyer” and one of the top 50 women lawyers in both Massachusetts and New England. She is a member of the H.A.L.O. Board of Directors, President of the Cambridge-Arlington-Belmont Bar Association and a member of the Massachusetts, Rhode Island, New Hampshire and Women’s bar associations.
To learn more about H.A.L.O. CAN, visit www.halo.org or email Becky at firstname.lastname@example.org
|Wendy sings to Cody
“When we present the residents with different sounds, beats, rhythms, instruments and tempos it elicits joyful emotions, as evidenced by the smiles, clapping, moving and rocking,” says Laura Kirk, Director of Therapeutic Recreation at New England Pediatric Care.
That’s why she frequently schedules musicians to entertain and interact with residents at the skilled nursing facility for children in Billerica, MA.
Wendy Frank, a former music teacher, works with small groups at NEPC twice a month.
“What I do is try to find things that make each individual person as joyful as possible. I play guitar and sing. Some kids do vocalize, so I try to get a feel for how they can express themselves, then I repeat sounds back to them,” she said.
She also employs tactile instruments such as a tambourine, and Tibetan singing bowls so the kids can feel music vibrate through their bodies.
“It can be slow to get to know how to reach these kids, but I love making them happy,” said Wendy.
“The staff is very involved when I visit. They say some kids never smile except with music, and that a song can elicit a comfort and relaxation response from a highly sensitive resident.”
|David plays for Izamar
“I try to connect to the kids through sound and energy,” he says. “Musicians are attuned to their audience. Here I don’t get much feedback, so I try to create an upbeat mood and atmosphere.”
Laura Kirk summed it up: “There is really something so magical about music . . . it really touches and reinforces the joy within us.”
For more information about this story, contact Laura Kirk at email@example.com, Wendy at firstname.lastname@example.org or Dave at email@example.com.
You might also be interested in a new book, The Power of Music, by Elena Manne, which focuses on the science of how music changes the brain.