Newsletters - FALL 2016
Quality Of Life Remains Our Mission
Quality Of Life Remains Our Mission
By the time you receive this newsletter, U.S. voters will have elected a new president. The extended campaign has bored, inspired, outraged and challenged people around the world. Whatever the result, we can return to less partisan issues now and the business of making lives better.
The Help a Little One Foundation provides tangible items and supports programs that improve quality of life for children with severe neurological impairment. Additionally H.A.L.O. endeavors to enhance participation and awareness in the community and to assist and support the caregivers of these children.
As we begin our 24th year, we are making a strong effort to refresh our perspective. We have recently welcomed Ian L. Katz, M.D., Peter Mowschenson, M.D., Michael Ronthal, M.D., and Harry Webster, M.D. as advisors, and expressed our deepest appreciation to departing directors Raymond C. Rosen, Ph.D., Leslie Rubin, M.D., and Robert Snider, Esq., for more than two decades of commitment to “our” kids.
Our efforts are continually evolving to meet the needs of the children. Modifications to our "Sunday Swim and Sing" program mean we will touch more families in 2017.
We have also revamped our website, WWW.HALO.ORG, to improve search functionality and the donation interface. If email addresses are supplied, we can now send individual notifications to multiple people to acknowledge that they or a loved one has been honored or commemorated in a single donation.
Thank you for your continued interest and support of H.A.L.O.
H.A.L.O.’s Gifts Help Kids Feel Included In Activities
It’s the little things that make life meaningful for children - with or without neurological impairments.
H.A.L.O.’s mission continues to be enhancement of quality life for young people with severe neurological challenges. Here is a sampling of recent gifts to families and nursing homes.
Brayden, 6, received a red (his favorite color) adaptive tricycle. Riding it makes his face “light up” at school, according to his program coordinator at the Family Partnerships of the Southeast. Brayden has a long list of neurological impairments. His mother, a single parent in poor health, takes excellent care of him but can’t afford "extras."
Rebekkah, 4, has had five surgeries for spina bifida. She gets around in a wheelchair or with braces and a walker. The Radio Flyer wagon H.A.L.O. purchased enables her to participate in outdoor activities with her family. "She loves riding in her wagon. It will make life much easier when we take our kids out on family adventures," said her dad.
Brian, 15, born at 26 weeks, has left-sided hemiplegia, a form of cerebral palsy. He received a MusicGlove hand rehabilitation device that doctors and his family hope will improve his hand function through musical game therapy.
H.A.L.O. funded the Spooktacular Carnival at New England Pediatric Center in Billerica MA this year. Children, staff and family members enjoyed themed games while a DJ played music. The residents were delighted to handle live animals from Animal Adventures. The photos (below) show sisters Leah and Melanie enjoying their costumes and Brian interacting with an alligator.
"The H.A.L.O. Foundation continues to be instrumental in enabling us to provide residents with a beautiful tapestry of new experiences that stimulate the imagination, put a smile in their hearts, enhance their sensory experience and simply provide a platform for good clean fun! “ said NEPC Recreation Director Laura Kirk. “Thank you, H.A.L.O."
H.A.L.O. also funded the purchase of two SMART boards for a new transition classroom at Ivy Street School in Brookline, MA.
Ivy Street educates a broad range of children with brain based challenges, including traumatic brain injury, congenital brain malformation, and conditions such as Dandy-Walker Syndrome. Teachers say the visual nature and interactivity of the technology keep students’ focus on the lesson and increase motivation.
Pediatric Center Evacuated In Just Nineteen Minutes!
On October 6th, Seven Hills Pediatric Center in Groton MA moved 83 medically-fragile children and young adults out of the building in 19 minutes.
“It was our first-ever full evacuation drill and it went extremely well,” according to Executive Director Holly Jarek, DSc VP/NHA.
The exercise was provoked by the impact a tornado had on a Midwest nursing home. It ripped the roof off in the middle of the night, pulling out the wiring and setting off sprinklers, forcing rapid removal of residents, she said.
“Our residents are non-ambulatory and have multiple disabilities. We wanted to know that we could quickly bring them to safety if we needed to, and it was a real morale booster to confirm that we could.”
Nursing home evacuation plans are regularly reviewed with local and state emergency officials. Seven Hills Pediatric Center had conducted untimed drills in the past, but until now, the full contingent of residents had been moved only into the hallways during practices to avoid major disruption in their schooling and medical treatments.
“We have a wonderful relationship with local fire and police and met multiple times in recent months to devise this plan together,” said Ms. Jarek, the director.
Ultimately 120 staffers, volunteers, police and firefighters executed the fullscale evacuation. Teachers, aides, therapists, medical and administrative staff and volunteers were quickly engaged in pushing wheelchairs, holding doors open, moving bulky medication carts outside with vital medications, and even packing up computers so caregivers could access medical records outside the building.
In the case of a major disaster, the protocol would be to pull the fire engines out of local stations to provide a big warm bay as a staging area and shelter for the residents, explained Ms.Jarek.
“What you don’t want to do is tie up hospital beds if other options are available,” she said.
Groton Fire Chief Steele McCurdy was impressed with the efficiency and speed of the evacuation, and appreciated the opportunity to learn more about how the staff interacts with the residents.
“We were primarily observers, but some of our personnel learned how to use the (bed) lift systems. The drill also made us realize how critical it will be to bring in lots of resources in a short time.”
“A major event would require massive manpower,” the chief added. “Inclement weather would impact our ability to transport also, so we now plan to activate our statewide mobilization plan early on to quickly bring mutual aid teams of ambulances, fire trucks and personnel from other parts of the region.”
The next drill will be conducted during harsher weather conditions or perhaps at night or on a weekend, to identify more obstacles and challenges to evacuation.
“We have a great structure, and we will continue to improve on it,” said Chief McCurdy.
Both Seven Hills and New England Pediatric Care in Billerica MA and other members of the national Pediatric Complex Care Association recently participated in a national conference in
Richmond, VA on evacuation strategies specific to pediatric facilities. The New York City Pediatric Disaster Coalition at Maimonides Medical Center is coordinating the project.
For more information about the project contact leaders Emily Raisch and John Jermyn through the website: http://www.programinfosite.com/peds/
To learn more about disaster planning for long-term skilled care facilities in Massachusetts, visit: http://www.mutualaidplan.org/Info/Default.aspx?OrgID=108
New Focus For "Swim And Sing" Program
As H.A.L.O.’s Family Circle celebrates 10 years of offering the Sunday Swim & Sing Program, the format is changing to reach more families in the Greater Boston area.
This winter Family Circle will transition to a Family Supported Swim & Sing Program Model in place of the staffed three-hour respite and socialization activities offered in the past. Instead of providing staff partners to guide individuals through activities, parents and caregivers will be required to remain onsite and provide the needed support and care for participants.
“The changes address our biggest challenges: staffing and the waiting list,” according to Doreen Cummings, Director of Program Development for JF&CS Services for Adults with Disabilities, which operates the program for H.A.L.O.
“First, hiring personnel has been an obstacle because the program requires intense training and year-long commitment to build a relationship with an individual with complex physical and communication disabilities,” she said. The limited number of weekly shifts and lack of public transportation to the suburban pools has also limited the applicant pool.
“Secondly, once relationships have been established, families rarely leave the program because there are so few socialization opportunities for people with severe disabilities,” Doreen said. “It has been frustrating for the more than 60 families on the waiting list.”
In an October 16th letter to families, Doreen explained that the reformatted program will be offered at the Newton Jewish Community Center (JCC), with lifeguarded swimming and music therapy as the main activities.
There will be 25, three-hour sessions throughout the year, with two different time slots to choose from: 11am-2pm, or 2pm to 5pm. The original, staffed program will continue at the Stoughton, MA YMCA location for a limited number of families.
An on-site Program Director, the Music Therapist, and a small team of helping staff (2- 4 staff members) will assist family caretakers at the program. Families can choose to send a Personal Care Attendant (PCA) or other care provider in place of a family member if they wish to use the time for respite.
“The Family Swim & Sing Model is a great way to bring the family together in a positive, healthy way,” Doreen said. “Siblings are welcome and encouraged to attend the Family Sunday Swim & Sing sessions and to bring a friend.”
Current and wait-listed families will need to complete a new enrollment form for the family supported program. Assignments will be based on need and first request. A minimal program fee will be charged; scholarships are available.
To sign-up or refer a family, please contact Sandy Slavet, JF&CS Disability Resource Network Director, 781-647-5327.