Halo Stories

Founder’s Message - You Are Our Children’s Champions

2011-11-14T10:06:00.001-05:00

Dear Friends,

The Boston Bruins’ Stanley Cup win is a distant memory for sports fans in New England and we didn’t find much to cheer about as we watched our Red Sox fizzle in September, but the team at the Help A Little One Foundation chalks it up as another winning season because YOU still champion the children who cannot advocate for themselves.

As supporters of the Help A Little One Foundation you make our Family Circle program possible, as well as the individual gifts we make to enhance the quality of life for children with severe neurological impairment. You are part of a small army of people who remember that individuals with severe disabilities deserve to live a life as fulfilling as anyone else.

Your kindness expands their horizons and makes all of our lives worth living.

Twice each year we share stories about those who make life better for H.A.L.O.’s children. I hope you enjoy getting to know people like Peg Knox and Mike Andrews. They are the people we all strive to be.

Thank you as always for your continued good wishes and generosity.
Sincerely,

Alan Pinshaw

Clinic Provides Dental Services in MA

2011-11-14T10:05:00.001-05:00

Linnea, Donna and Lori staff the new dental clinic

The Seven Hills Foundation and Tufts University School of Dental Medicine have collaborated to open a dental clinic for individuals with developmental disabilities at Seven Hills Pediatric Center in Groton, MA.

About 250 patients with physical and developmental disabilities have been treated at the Susan and Richard Smith Family Foundation Dental Clinic since it opened in May. Dr. Karen Chang, director, and a staff of three expect to serve about 600 developmentally disabled individuals in the region annually.

The dental clinic provides comprehensive services including cleanings, x-rays, fillings, periodontal treatment, root canals, prosthodontics and oral surgery for patients from age six months through adult years. Patients are usually seen four times a year, instead of twice, because their disabilities make it difficult to practice regular oral hygiene.

“It takes a special kind of person to work with this population,” says the clinic’s dental assistant, Donna, who worked for Developmentally Disabled Services (DDS) before training for the position.

“Not everyone can work in someone’s mouth, and not everyone can work with profoundly disabled people,” she said. “You’ve got to be open-minded, flexible and patient, and willing to learn how to communicate with people who have cognitive challenges.”

The staff focuses on accommodation as well as technical expertise because the patients may be confused or frightened about treatment. Collectively, they have nearly a century of experience and stay current with new practices in the field; for instance, a recent training involved protocol for seizures.

“Sometimes we need to desensitize the patient to new surroundings . . . a first timer might just watch TV in the waiting room,” said Lori, one of the clinic’s two hygienists. She says she will do whatever is necessary to make a client comfortable with treatment. “I’ve cleaned teeth with the client sitting on his mother’s lap, once even in the back seat of a car. Whatever works, I’m willing to do it.”

Linnea, the clinic’s office manager, said parents often leave the office in tears because they are so happy to finally find a dentist that can treat their children.

“They apologize over and over when a patient screams or moves around, but we understand. . . . They’ve had to fight for everything for their child, and then they find us, people who understand,” she said.

“They cry. We cry. We get lots of hugs,” said Donna.

To learn more about The Smith Family Foundation Dental Clinic call 978.448.3388 ext 354.

Grateful Family Builds Playground

2011-11-14T10:04:00.001-05:00

One day the Andrews family took a vacation, leaving their profoundly disabled daughter in the competent hands of respite staff at Mayflower (now Radius) Pediatric Center in Plymouth, MA. When they returned her giggles and smiles told them she had enjoyed her stay.

Shannon, shown at age 5,
inspired her family to build a playground.

Mike, who works in the construction supply business, and his wife Patty, a nurse, soon got back into the routine of work and 24 hour care. Shannon had a condition known as lissencephaly. A small army of therapists, teachers and nurses came to their house to provide services to the little girl who depended on others to meet all her basic needs.

But after a second respite stay, they noticed the change in Shannon again. “We realized that wow, she really liked it there,” said Mike. “She enjoyed the stimulation and company of her peers. It was a tough decision to place a seven year old in a nursing home, but it was one of the best things we did for her. She had a smile on her face every day she was there.”

The family became active in the Parent Advisory Council at the Radius Day School. PAC sponsored carwashes and Tupperware sales to raise money for an accessible playground but after five years they weren’t even close to the thousands needed. So when Shannon passed away in 2009 at age 21, Mike, Patty, and Shannon’s two younger sisters, Meg and Kaelin, suggested donations as a fitting memorial.

“Shannon thrived at Radius and we wanted to give something back,” said Mike.

Donations from local lumber companies and community groups put the fund over the top and construction finally got underway in April 2011. Mike used his architecture background to design the covered play areas and enlisted friends such as Al Cedrone and Tony Salvucci to help him build the playground on Saturdays. As word spread, Carpenters Local 33 of Boston got involved.

“Every week people who didn’t even know me, or Shannon, or my family, showed up and put in time,” Mike said.

Linda White, director of education at the Radius Day School, said the Shannon Andrews Memorial Playground provides expanded learning opportunities for day students and residents.

“Everything is within reach. All but one of our students are in wheelchairs, so the ramps and railings give them safe access to covered outdoor areas. Next spring we plan to introduce activity boards to work on fine motor skills and attention goals outside. The kids can experience movement in two hammocks and sensory stimulation in the sandbox and other play space,” she said.

Learn more about Radius at www.radiushealthcarecenters.com/pediatric

How Does H.A.L.O. Help?

2011-11-14T10:01:00.001-05:00

Family Circle: Swim and Sing recreational programs, respite and resources for families
H.A.L.O. CAN: Assistance for families filing paperwork for legal guardianship
Holiday gift program at pediatric nursing homes
Matching gifts to families for non-medical equipment, including adaptive tricycles and wheelchair lifts for vans, made to families who care for children at home
H.A.L.O. Holidays: medically supported mini-vacations to help families bond outside nursing home walls
Grants to programs carrying out H.A.L.O.’s mission

Peg Knox: A Special Nurse for Special Kids

2011-11-14T09:58:00.001-05:00

Peg Knox, Director of Nursing Services

When Margaret “Peg” Knox was in sixth grade, she was asked what she wanted to be when she grew up. It was a toss up: either a cook or a nurse. She ended up in pediatric nursing, making a life’s work of caring for disabled and medically fragile children.

“In her 43 plus years at Cedarcrest Center, Peg has at every turn worked to make Cedarcrest a home first and foremost: a place where each child is loved, cared for and ensured an opportunity to do all the things children do,” says Cathy Gray, President and CEO.

As she prepares to retire in 2012, Peg admits she initially resisted working at the farmhouse that served as Cedarcrest’s first “happy home for handicapped children.” She only gave it a try because her mentor at Elliott Hospital, pediatrician Charles McMurphy, kept insisting it was a match. He was right. First she spent one day a week, then two, then all of her time “on the mountain.”

As technology increased survival rates for children with complex conditions, the job changed. The children being admitted to Cedarcrest Center for Children with Disabilities were much more medically fragile. They required equipment like G-tubes for feeding and tracheostomies and other respiratory support.

After a while the increased use of life supporting technology took over too much floor space, and in 1990 Peg supervised a move down the mountain into the current, modern facility in Keene, NH.

For the past 21 years Peg has continued to deal with change as Director of Nursing Services. When no New Hampshire facility offered ventilator and IV care, she trained her nurses so families would not have to go out of state. As the need grew for short term stays and post operative special care for medically fragile children, Peg qualified the staff to meet their needs.

Even though Peg has been on call 24/7 for most of the past two decades, she doesn’t like to acknowledge any personal sacrifice. She says it’s part of the job to get out of bed in the middle of night to manage a medical crisis or stay with a child in the emergency room until the family can arrive.

“Families are so vulnerable in these situations, they need to know we are in their corner and their child is going to get the best care possible,” Peg said.

Peg is famous for bring Cedarcrest’s children and families together with her native Keene, NH community at events like the Spring Prom and annual picnic. Her loyal quilting and sewing groups across the state are legendary for the beautiful curtains, quilts and accessories they hand make for the children’s rooms. Even the child-size stretchers and positioning pillows have a whimsical, colorful touch because of “her” volunteers.

“Appreciation is what keeps people connected,” Peg said when asked for her secret.

Since Peg announced her retirement next April, she has been collecting a great number of thank yous herself from the families of current and former residents. With characteristic modesty she says:

“It has been my privilege to work with these children.”

To learn more about the Cedarcrest Center visit http://www.cedarcrest4kids.org/.

Families Clamor for Family Circle

2011-11-14T09:57:00.001-05:00

Luke and a staffer enjoy Family Circle’s
Sunday “Swim and Sing” program

Families who care for children with disabilities at home have expressed heartfelt appreciation for H.A.L.O.’s Family Circle “Swim and Sing” respite program.

They say they have to look far and wide to find social activities for their children.

Our three hour of activities on Sundays provides socialization, physical movement and just enough time for parents to take a break from responsibilities. The program is offered in Newton, Massachusetts and will open in Stoughton, MA soon.

“It’s perfect for Alex because she loves music and the only sports activity she is capable of is swimming,” says Michele, whose daughter Alexandra was born with a brain disorder and had a hemispherectomy to correct seizure problems. They have been participating since 2007, coming straight from Sunday Mass to the pool, she said.

“The program is unique because it is offered consistently, the staff is excellent, and there just aren’t many activities for disabled children as they get older,” said Michele. “I can’t say enough good things about it.”

When the family lived in Iowa, Michele said only one activity was available to Alex outside of school, and it was not a year round program. In New Jersey, the family was forced to choose between desperately needed home respite services or outside activities, so opportunities to interact with peers were limited.

Now 25, Alex goes to a day habilitation program during the week, and is on waiting lists for a few weekday activities offered in her community.

Alexandra, right, and Sarah. a staffer,
at a recent Family Circle program

Christine, mother of another program participant, agrees that finding programs for children with disabilities requires research, patience and persistence.

“Any parent will tell you that we will drive almost anywhere for an activity geared to our child’s abilities,” she said. The family lives in Milton, son Luke goes to school in Southborough, and she drives him to activities in Framingham and “wherever we need to go.”

The Sunday program at the Newton JCC is Luke’s preferred activity, according to Christine, who says he looks forward to it. He attends two to three times a month and would gladly go more, she said.

H.A.L.O.’s board of directors recently renewed its commitment to fund Family Circle activities for another five years. This means 18 families will benefit from recreational services at the Newton location over a 30-week schedule and at least 10 more families when the Sunday program resumes in Stoughton at the YMCA. Jewish Family and Children’s Service of Boston manages the programs.

For information contact Melissa Demir at 781-693-1344.

Why Nursing Home “Family" Runs 5K Fundraiser

2011-06-05T22:40:00.003-04:00

For the past 18 years, staffers, family members and residents from New England Pediatric Care in North Billerica MA have been running, walking or riding in strollers in the annual Cool Kids 5K Road Race.

“The race brings residents, families and staffers together and raises money to support recreational activities that are so important to residents of the nursing home,” said Ellen O’Gorman, NEPC Executive Director.

NEPC resident Becky L.’s family has been pushing her in the race for many years. This year Becky’s brother David Taber Jr., cousin Nicholas Smith and family friend David Flores ran.

Dozens of employees participated again this year, among them were first time runners nurse April Champa and her daughter Kaylee.

Fifteen-year old Courtney Hawkins is a Cool Kids veteran. Her Dad Brian carried her on his back before she could walk; then she graduated to a stroller and has walked or run in almost every race ever since. Now a track and cross country runner for her Milford NH high school, Courtney came in first three out of the past four Road Races. This year’s field of 112 was the biggest yet; Courtney was the first female finisher.

‘“I do it because I enjoy racing, but mainly because I want to help the kids at New England Pedi,” Courtney said.

Her mom, NEPC Director of Rehabilitation Nancy Hawkins, says she walks because she sees a direct benefit to the residents she works with. The proceeds supplement grants for field trips, and help pay for the cost of medical support for those outings.

For more information visit www.nepc.org.

Conversation With A “Rolland” Outreach Coordinator

2011-06-05T01:04:00.000-04:00

Sue Crossley helps families understand the community housing options now available to develop-mentally disabled adults under the “Rolland” initiative. She is one of 30 outreach coordinators for the Massachusetts Department of Developmental Services (DDS).

“I meet with families, share information and listen to what they have to say. I encourage them to visit homes in the community and I try to answer their questions and make sure they don’t feel pressured,” said Sue. “Mostly I am an educator.”

Sue took on this position shortly after the courts gave state agencies a 2012 deadline to move 640 eligible residents from nursing homes to more appropriate housing in the community.

This action was a follow up to the 1999 class action suit filed against the state on behalf of Loretta Rolland. That lawsuit challenged the state’s practice of “unnecessarily and inappropriately admitting and confining individuals with mental retardation and other developmental disabilities” in nursing facilities.

Sue had worked for the benefit of disabled individuals for more than 30 years, including 8 years at the helm of a successful non-profit agency that helped people with disabilities to buy their own homes. She saw the job as a unique opportunity.

“I am not pro-community living or pro-nursing home. It really depends on the individual as to what is their best option. There are a lot of misconceptions out there concerning Rolland,” said Sue. “My role is to address those misconceptions and help families really understand what community living and nursing homes both offer.”

“Group homes are not what they were 20 years ago. . . There are new options that didn’t exist when families agreed to placements in nursing facilities. Putting a child in a nursing home was an emotional, wrenching decision in the first place. Once families have built relationships with the nursing home and see it as their (now adult) child’s home, I understand that they may be reluctant to consider changes.”

Sue said community placements:
► Are located across the state, so individuals may be able to move closer to their families
► Staffed by well trained and caring individuals
► Offer social and recreational opportunities not available in medical facilities
► Are built or renovated to meet the disabled individual’s specific needs
► Can provide care for some medical needs

“In this final year of implementing the Rolland agreement the biggest concern I have is that every individual should always have options to live as independently as possible,” Sue said. “It’s all about having choices.”

For more information about Rolland visit: http://rollandoutreach.org/index.php.
Sue Crossley recently received DDS’s Individual Excellence Award for her outstanding work in facilitating the Rolland Family to Family initiative.

What Does H.A.L.O.’s Support Mean To Families?

2011-06-05T01:03:00.002-04:00

Mikayla’s Mother Says “Inclusion”

Dear H.A.L.O. Foundation,

Mikayla is our beautiful daughter. Born with brain damage, she is completely dependent on others for all her care.

Unable even to hold up her head, she can not sit in a car and transferring to a specialized car seat would be most difficult, if not impossible, as she has grown older. We are most grateful to the HALO Foundation for the grant to help with the cost of our new rear-entry, wheelchair-accessible mini-van conversion. Our prior vehicle had over 175,000 miles, was over twelve years old and on its second transmission.

Despite her disabilities, we have always strived to include Mikayla in our local community and schools, as well as all our family activities.

Six years ago, her third-grade classmates wrote and illustrated a book about having friend with a disability. Our Friend Mikayla was published in late 2006 and has been read by and to children across the country. Inspired by the book’s success, the kids’ efforts and the importance of their message, we have founded Mikayla’s Voice. An acronym for the Voice Of Inclusion for Children Everywhere, we are a non-profit organization which inspires kids of all abilities to share the message of inclusion.

Mikayla will likely never speak a word, but with the help of her friends she finally has a "voice." Together we travel across the state and beyond to share her story and the value and benefits of inclusion.
Without our new handicapped accessible vehicle we would not be able to continue our efforts. We offer our heartfelt thanks to the HALO Foundation for your support of our daughter, her inclusion, and our efforts.

Hugs,
Kim, Michael, Mikayla and Lauren

Charlie Can Visit His Family Again

A very grateful mother says the portable ramp H.A.L.O. gave to her family has made it possible for her son to leave his nursing home and spend every other weekend with them.

“For years we were bringing Charlie to his grandmother’s house every two weeks,” Kathy B. told H.A.L.O., “but then she moved into a nursing home and we were unable to take Charlie to her.”

Because the family home is inaccessible to wheelchair users, and Charlie, is now too large for his father to lift alone, the 27-year-old didn’t see much of his family for a while. Kathy couldn’t drive because she was wheelchair bound with rheumatoid arthritis until recently but she is now able to walk following knee replacements.

Although Charlie is unable to speak or control his limbs, Kathy said he thrives in the wonderful environment at his nursing home, but she missed him terribly.

“H.A.L.O.’s gift has been a blessing. Charlie gets to see my daughter and son, my mother and the grandchildren – everyone! We appreciate it so much,” she said.

She thinks Charlie seems to appreciate the time they spend together, too.

“He knows us, we’re his family.”

NH First Lady Addresses Council

2011-06-05T01:01:00.000-04:00

New Hampshire’s First Lady, Dr. Susan Lynch, (right) spoke about obesity prevention for children with develop-mental disabilities and mobility challenges at the Cedarcrest Center’s Annual Advisory Council breakfast in Keene, New Hampshire, recently.

Also at the meeting were Dr. Geraldine Rubin (left) chair of pediatrics at Dartmouth-Hitchcock Keene, and Dr. Patricia Campbell (center), president of the New Hampshire Pediatric Society.

Cedarcrest Center provides specialized medical care, education and therapies for children with complex medical and developmental needs. The 75-member Advisory Council links Cedarcrest Center to professional, business, and social communities across New Hampshire.

For information visit: www.cedarcrest4kids.org

New Organization Will Benefit Children

2011-06-05T01:00:00.004-04:00

A new organization is being formed to advocate for excellence in the long term care of children with medically complex conditions.

The Association of Providers for Children with Complex Medical Needs APCCMN will promote communication among facilities and care providers and advocate for sustained, cost effective long-term care. It will also represent the needs of professionals, the patients they serve and their families before government, regulatory and professional societies.
“The new organization gives us a structure for sharing information and greater credibility and visibility in advocating for the children we care for,” said Ellen O’Gorman, director of New England Pediatric Care in N. Billerica MA.

APCCMN is an outgrowth of the Building Bridges Network, whose founder, Sister Katherine Smith, Ph.D., R.N. of Portland OR. was honored at the “Navigating the Care of the Medically Fragile Child” conference in April. More than 150 providers and professionals who work with 5,000 medically fragile children at 125 pediatric residential care facilities across the U.S. and Canada attended.

For more information contact Ellen O’Gorman at www.nepc.org

Life Skills Interns Connect With Kids

2010-11-16T22:21:00.005-05:00

Interns in the Life Skills Programs at two New Hampshire high schools are enriching the lives of residents at the Cedarcrest Center for Children with Disabilities.

For two summers now, the pediatric facility in Keene, NH has hosted a community-based vocational training program for five student interns from Monadnock Regional and Hinsdale high schools. The teens have various developmental disabilities.

For part of each day, Cedarcrest Center staff members mentored the interns in job-shadow rotations – in housekeeping, lawn care, environmental services, facility maintenance, food services and administrative services. Then the interns honed basic academic and workplace skills with tutors from their respective schools. For the remainder of each day, the interns interacted directly with children at Cedarcrest Center, reading to them individually or engaging them in a game or activity.

Karen Thompson, Vocational Coordinator for the participating schools, said the Cedarcrest Center “is a perfect match for the six-week program because our missions are aligned. “We help each individual – regardless of ability or disability – to develop and integrate academic preparation, socialization and functional life skills, ” she said.

Sherri Vaillancourt, a Team Leader at Cedarcrest Center, coordinated the work experiences for each intern. She also facilitated the educational and recreational activities that provide a platform for interaction between interns and Cedarcrest students.

“The program is a “win-win” situation for everyone, especially the children who live at Cedarcrest Center,” Sherri says. Teens at Cedarcrest Center enjoy interacting with other adolescents, and the younger children respond warmly to the special attention they receive from interns.

Interns from the Life Skills Program benefit from acceptance as valued colleagues by Cedarcrest Center staff, and gain confidence as they practice important leadership skills.

Cedarcrest Center for Children with Disabilities offers long and short term care for children with complex medical and developmental needs. For more information visit www.cedarcrest4kids.org or call (603) 358-3384.

H.A.L.O. Initiative Answers Families Legal Questions

2010-11-16T21:53:00.008-05:00

This summer H.A.L.O. established the Children’s Advisory Network (CAN) to help families deal with Massachusetts’ complicated maze of regulations governing care of children with neurological impairment and complex disabilities.

Attorney Arthur Sneider, one of several volunteers, has already aided one family that was in imminent danger of losing much-needed services for their child. With just one day remaining for an appeal, Arthur wrote a letter of advocacy that made the Medical Review Team aware of important information and resulted in restored eligibility.

The goal of H.A.L.O. CAN is to assist families with limited resources to obtain legal assistance in matters affecting their child’s care, and to provide emergency legal action when necessary, according to Rebecca Dalpe, of Foster & Eldridge, LLP.

Rebecca and Arthur, an attorney at Mulvey & Sneider, P.C. of Chestnut Hill, MA, are part of a group that will respond to legal questions as needed.

Disability law and advocacy is very specialized. The H.A.L.O. CAN team received an extensive orientation and resource materials from partners at the law firm of Clark, Hunt, Ahern & Embry, which represents many New England facilities that care for children with neurological impairment. CHA&E also supplied a list of law firms that can help when legal needs might exceed H.A.L.O. CAN volunteer capabilities.

It is very important that families understand that parents are not automatically considered to be the guardian of their severely disabled child once they have reached adulthood, said Joshua Krell, CHA&E partner. A legal guardian must be formally designated before reaching the age of majority in order to avoid interruption of necessary benefits and services such as medications, he said.

Families can contact H.A.L.O. CAN through the administrator of their child’s pediatric facility or by clicking HERE. Legal advice is currently offered only in Massachusetts.

School Embraces Child, Family

2010-11-16T21:17:00.007-05:00

Since 1974 children the Community Therapeutic Day School has embraced children with complex emotional and neurological difficulties and worked with their families to enhance their abilities. Located on the former homestead of John Parker, captain of the Lexington (MA) Minutemen
during the Revolutionary War, CTDS is small special education school for children 3-12 years old.

“Our kids have multiple diagnoses that interfere with their learning and prevent them from attending regular school programs,” says Nancy Fuller, co-founder and executive director. “They need complex medical, educational and therapeutic interventions, including occupational, speech and language therapies and psychotherapy.”

At CTDS the teacher, the parent and doctor collaborate in a “holding environment” to help children make positive changes and grow and develop their potential as individuals. Classes are small; five classrooms can house six to seven children each. Graduate interns from Boston University, Lesley, Tufts and other Boston area colleges assist the professional staff and provide individualized support.

“People who work here have a deep love of children and care about them,” said Nancy.

Daniel Reinstein, Ph.D, neuropsychologist at the school, notes that CTDS focuses on diagnostics evaluations, integration and treatment.

“It is not just the psychotherapist or the speech therapist treating the child. Every person who comes in contact with the student is acutely aware of his special needs,” he said. The school embraces the whole family and offers support groups for parents, siblings and grandparents to help families feel less isolated and more involved with their family member.

CTDS also provides integrated services to more than 200 students in other school systems and teaches families how to advocate for their child. The goal at CTDS is to transition children back into traditional schools whenever possible. Many students also move on to secondary special needs schools.

This story is part of H.A.L.O.’s ongoing effort to highlight services for children with varying degrees of neurological impairment. For more information about CTDS call (781) 861-7081 or visit www.communitytherapeuticdayschool.org

“Doyle Classic” supports H.A.L.O.

2010-11-16T20:41:00.005-05:00

About 15 years ago Jack and Patricia Doyle invited a few friends to play golf at a challenging executive course they discovered in Plymouth, MA.

They had such a great time they decided to make it an annual event. So many friends and associates wanted to join in the fun, the Doyles and daughters Shannon and Allyson designated the “Doyle Classic” a fundraiser for the Help A Little One Foundation. One hundred percent of the tournament profits and raffle proceeds from go to H.A.L.O. The player with the tee shot closest to the pin splits the 50/50 pot with H.A.L.O. too.

“This year was our biggest tournament ever, with 90 golfers,” says Jack, who learned of H.A.L.O. through professional relationships before he retired from the insurance industry.

“You can give to the big guys, the Jimmy Fund and such, but it’s also nice to know where your donation is going,” says Jack.

Jack, who was also a high school basketball referee for many years, collects gifts and prizes year ‘round for the tournament. Participants receive mugs, golf vests or golf umbrellas donated for the cause, plus a sleeve of golf balls marked with the “Doyle” shamrock and a Grandma’s Coffee Cake.

“People duck when they see me coming,” Jack jokes about collecting prizes for the tournament. “Seriously, people are very generous. They donate Red Sox tickets, restaurant gift certificates and other great prizes.”

Each year the tournament ends with a steak dinner and hilarious awards ceremony emceed by Jack.

The Doyle Classic has raised thousands of dollars for H.A.L.O. over the past decade, and garnered plenty of good will. “Everyone always asks about Sarah and H.A.L.O, ” Jack said.

Seven Hills Residents Join Team For A Day

2010-06-14T16:06:00.005-04:00

Young people with disabilities are often isolated from their peers, but community members in Groton, MA frequently interact with residents at Seven Hills Pediatric Center.

This winter players in the town middle school hockey league invited residents to attend a tournament held at The Groton School, a private college preparatory school in Groton. In the spring local kids hosted more residents at one of their Little League games.

“Being included adds variety to the daily routine and activities like these give residents exposure to other children,” says Arlene Howard, volunteer coordinator. “We are fortunate to be in such a welcoming community.”

For information or to volunteer, please visit http://www.sevenhills.org/

Gavin Middle School Gets Adaptive Trike

2010-06-14T16:04:00.002-04:00

H.A.L.O. recently donated an adaptive tricycle to the Gavin Middle School in Boston at the request of Physical Therapist Susan Maltz, MPT.

It adds variety to therapeutic treatment plans and keeps students motivated to exercise, and everyone thinks it’s pretty cool when students ride the Rifton Wrangler through the cafeteria .

Gavin is a traditional public middle school which also hosts special needs programs that serve students with moderate to severe developmental disabilities. Some students require the use of wheelchairs, feeding tubes or other medical equipment.

“The kids are 11 to 14 years old and it is difficult to keep them engaged in continuous motor activity,” said Maltz, “I can’t express enough how it important this bicycle is to our program.”

She said bike riding helps students increase muscle strength, joint motion, balance, and coordination, and improve movement and fine and gross developmental skills.

The rectangular handlebars offer plenty of places to put hands; the low cross bar makes it is easy to mount; and the adjustable seat with higher back provides stable sitting.

“Not only are all the kids crazy about it, they can do it themselves. It’s age appropriate and such a normalizing thing,” said the therapist. “Their faces just light up when they ride and the other students enjoy watching them.”

“I am totally grateful to the H.A.L.O. Foundation for giving us the tricycle,” Susan said. “In addition to the physical benefits it also provides a very important social experience.”

For information about Rifton adaptive tricycles visit http://www.rifton.com/ or call 800 571-8198. To make a request visit http://www.halofoundation.org/.

Teens Thrive At Ivy Street

2010-06-14T16:02:00.009-04:00

Horror stories. That’s what parents of teens with brain injuries say about life before enrolling their children in the Ivy Street School.

Anger, frustration and sometimes violence were everyday events. Families felt out of control, children were socially ostracized, and schools regularly kicked them out. There was no happy ending in sight.

“Bridget was very angry about changes in her life but unable to deal with it because of her brain injury,” said one dad.

“Stephanie had seven failed (school) placements, because they didn’t understand how to help her, ” her mom said.

Ivy Street focuses on making life meaningful for the young victims of accident, stroke, tumors or genetic abnormalities, and helps them build bridges to adult life.

Brain injuries can be invisible,” said Barbara Salisbury, CEO of MAB Community Services, which operates the school. “Often our kids do well until adolescence, then they go out of control. Schools don’t know what to do, because they look OK on the surface.”

There were no signs of tragedy when HALO visited the school on the day of the annual talent show. Laughing young people rushed to assemble costumes and warmly greeted returning alumni and visitors.

“We take a team approach. We help students acquire skills and strategies to manage their disabilities and work closely with their families,” said Barbara. “The kids are with us for just a short time. They are with their families forever.”

Thirty students aged 13-22 live and attend school year round in a converted mansion in Brookline, a quiet Boston suburb. MAB (formerly Massachusetts Association for the Blind) founded the school in 1993 after medical advances improved survival rates for individuals with brain injuries.

Ivy Street tailors academic plans to each student’s education level and vocational interests. All students start with a job in the school, then advance to volunteer work and then compensated employment in the community.

“Work gives them so much . . . It provides structure, increases confidence and gives them hope. We try to help them build bridges to their future,” said Barbara.

Recent graduate Stephanie Leonard, 22, says Ivy Street helped her find her voice. She writes a blog for a local newspaper, was recently published in the inaugural edition of Our USA Magazine and has been accepted at a community college.

“Kids don’t come in neat packages” Stephanie’s parents told HALO. “Ivy Street transformed her life.”

For more information visit http://www.mabcommunity.org/.

H.A.L.O. Works With MassGeneral Clinic

2010-06-14T15:55:00.012-04:00

Kids who have conditions like muscular dystrophy, congenital myopathy, spinal muscular atrophy and mitochondrial disease can’t make their muscles work predictably, so they miss out on a lot of fun. Plus, they have to make frequent visits to the doctor and hospital.

In 2009 H.A.L.O. teamed up with the Pediatric Neuromuscular Clinic at MassGeneral Hospital for Children in Boston to help 30 of about 300 regular patients feel a little bit better about coming to hospital appointments.

The clinical team consulted with patients’ families, then purchased gifts from their personal wish lists. They presented the gifts as a surprise, usually at the patient’s next appointment.

“It was pretty special for the kids,” said Laurie Bliss, clinic coordinator, who, along with medical students Kelly Dominick, Kristen Lundgren and Jamie Brown identified the patients who could benefit from attention.

Gifts included books, Legos®, blocks, Hannah Montana® videos and things like movie gift certificates for older children. Recipients were 4 to18 years old.

“Everyone was so excited and thankful,” said Laurie. “When I gave one little girl her gift she couldn’t stop jumping up and down (albeit small hops) because she was going to be able to see a movie with a friend.”

Dr. Brian Tseng, MD, PhD and Director of Pediatric Neuromuscular Service at MassGeneral Hospital for Children, said the gift program dramatically enhanced the lives of the patients, because it came “out of the blue” and demonstrated that someone cared about their daily struggles.

“I work with amazing children and families who are unfortunately touched by devastating neuromuscular disorders. H.A.L.O.’s generosity made them feel extra special.”

To learn more about the clinic please visit: www.mgh.harvard.edu/children/specialtiesandservices/neuromuscular/

Or call 617 840-0528.

Vacations Strengthen Family Bonds

2009-11-14T15:38:00.004-05:00

Michael M. enjoys family time in Orlando, FL.

Family vacations are rare for children who live in a pediatric nursing home.
Most residents cannot speak or move independently, so it’s pretty intimidating to take them out of the building alone, never mind on a plane,” says Beth Barton, Director of Pediatrics at Radius Pediatric Center.
But the benefits outweigh the challenges, she said. Vacations strengthen family bonds and broaden the horizons of the children. That’s why businessman Bill Hallisey, Jr. owner of Shiretown Glass and Home Improvement in Plymouth, MA, rallied area merchants to donate a total of $10,000 towards the first of what he hopes will be many trips.

Bill Hallisey presents a check to Michael and Radius staff.

“When I was younger my sisters worked at the nursing home. I used to get introduced to some of the kids and joke around and get them to smile. Through the years I would drive by and wonder what happened to those children,. . . I wanted to help them give a child the experience of a lifetime,” said Bill.
In March, Radius sent Michael M. spent his mother, sister and brother for five days in Orlando, Florida. They were accompanied by a Licensed Practical Nurse who was familiar with Michael’s needs. Radius alswo arranged for a Certified Nursing Assistant in Orlando to provide total care for Michael, who is non-ambulatory and has complex medical issues.
“Michael loved the trip; we all did,” says his mother, Alison. “We haven’t been together like this in the nine or so years since he’s been away . . . It will be a lifelong memory for all of us.”
Beth Barton observes that residents seem more alert and interactive after extended time with their families.
Bill Hallisey says “Anything we can do to make the quality of life better for these children is just a good thing to do.”

The Schwartz Center for Children has been “helping children achieve their greatest potential” in Southeastern Massachusetts since 1947.

2009-11-14T14:00:00.005-05:00

The Schwartz Center for Children has been “helping children achieve their greatest potential” in Southeastern Massachusetts since 1947.
The center operates a Special Education Day School and provides Early Intervention and Outpatient Rehabilitation Services, which include physical, occupational and speech and language therapies. It also has a certified Sensory Integration Dysfunction therapist on staff to evaluate and treat children diagnosed with autism.
“Our facility is the only independent, community-based provider of therapy and education for children in the New Bedford, Cape Cod and Islands region,” said Executive Director Mary M. Hodgson. “We serve more than 1,000 children each year.”
Located in Dartmouth, MA, the Schwartz Center also offers several specialty clinics which typically are available only in major metropolitan areas. The clinics are staffed by specialists in Orthotics and Prosthetics, Seating and Mobility, Physiatry, Genetics Testing and Counseling, and Communication Enhancement.
The Center also provides high quality training and technical assistance to early childhood and special needs educators in regional Early Intervention Programs as part of the state’s Regional Consultation Program.
For more information please visit http://www.schwartzcenter.org/.

2Volunteer

2009-02-02T23:44:00.002-05:00

H.A.L.O.'s Family Circle respite program is being featured as a worthy cause on a Massachusetts website that matches teenagers with community service opportunities.

2Volunteer is operated by parents connected to Concord-Carlisle High School, where students must perform 40 hours of community work to receive a diploma.

"What we try to do is steer kids away from acts that are more perfunctory, and connect them with real learning experiences," says David Holdorf, executive committee member. The respite program exposes them to people with totally different needs. It's the kind of service that helps a kid in this very privileged community realize there is something else going on out there.

Family Circle's respite program and its overseer Jewish Family & Children's Service are listed under several categories on the group's website. Students select their own areas of interest, contact the agencies, then have their hours verified by supervisors at the sites.

"We think this kind of service is an important a part of education,:" says David.

To learn more about 2Volunteer, visit http://mail.colonial.net/~2volunteer/pages. Click here to learn more about Family Circle.

Keene NH Center Honors Family of Volunteers

2009-01-10T16:55:00.001-05:00

Volunteering is a family affair at Cedarcrest Center for Children with Disabililties.
Dave and Rebecca Badten and their teenage sons, Jonathan and Matthew, have been reading aloud to small groups and individuals at the Keene NH nursing home each week for about 18 months.
All of the Badtens love to read. They are very busy in church, school and community organizations in Keene but felt this was an activity they could share with residents, who are severely disabled.
"Our family has been enriched by this community over the years, and we want to give something back. Reading to the children of Cedarcrest Center is one small way we can . . . do it as a family!" says Rebecca Badten.
The nursing staff at Cedarcrest Center is thrilled that the Badtens can be depended on. They report that the evening visits provide the children with great opportunities for social interaction. Some of the boys particularly enjoy having Matthew and Jonathan read to them.

In October 2008 the Cedarcrest Center Board of Trustees recognized the Badten family as Cedarcrest Champions. CEO Cathy Gray thanked Dave and Rebecca for setting an example of volunteerism for their sons and recognized all four Badtens for making their contributions a family affair.
Cedarcrest Center for Children with Disabilities provides long and short term residential, medical and educational services for children with complex medical and developmental needs. For more information visit http://www.cedarcrest4kids.org/.

Seven Hills at Groton Expands Volunteer Program

2009-01-10T16:32:00.002-05:00

When Arlene Howard became the Activities Director at Seven Hills at Groton, there was hardly any community involvement with the nursing home. Using just a telephone directory and a spiral bound notebook, Arlene and a part-time staffer recruited a rotating group of about 20 volunteers who regularly interact with residents today. They sent hundreds of letters to area churches, schools and social and service organizations to find those special people who make life meaningful for children with severe disabilities.
Their volunteers include boarding students from The Groton School, college kids from Middlesex Community College and Fitchburg State College, and dedicated retirees, Lions Club members and even some staff members. The volunteers are pair uped with residents and guide them "hand over hand" through activities and help them enjoy musical performances, crafts and Wii game sessions. Arlene has developed a 90 minute orientation to sensitize newcomers to residents' needs and teach them how to communicate with the mostly non-verbal young people. She also helps them become familiar with the building and safety issues. Seven Hills at Groton honors its volunteers at an annual Ice Cream Social, but Arlene has also enrolled the home in the President's Volunteer Service Award program. Several volunteers have already earned bronze, silver or gold medals for 50, 100 and 150-hours of service.
Arlene also keeps meticulous listings of each resident's participation to ensure that everyone is included. Executive Director Holly Jarek credits Arlene's enthusiasm and organizational skills for the increased community involvement. "Arlene did it from scratch. I can't praise her enough." For more information about Seven Hills at Groton, contact Arlene at ahoward@sevenhills.org or visit http://www.sevenhills.org/shg.html

Grandfather Enjoys "Giving Back" at NEPC

2009-01-10T15:15:00.000-05:00

Dan Harty has been visiting children at New England Pediatric Care for nineteen years.

"Like many people I want to 'give back' because my life has been so blessed." Dan says.

He spends about eight hours each weekend, chatting one-on-one with residents, cuddling babies with complex medical needs and playing games with higher functioning young adults.

"There isn't a child or adult in this facility that I don't think of as my own," says the 64 year old grandfather.

For years Dan and his wife cared for foster children until they 'burned out.' A chance encounter at a bible study class connected them with NEPC. Dan bonded immediately with Latoya, one of the youngest and most severely disabled children at the Billerica, MA nursing home.

The staff was amazed at his ability to elicit responses from Latoya, who was severely neurologically impaired. Their relationship was very special. Sadly, she died at age 16 on Dan's birthday.

Dan continues to visit other residents and has no plans to retire from his volunteer work.
"Even though the kids can't communicate with words, they talk to me with their eyes," he says.
For information about volunteering at NEPC, call Laura Pica at 978-667-5123 or email: lpica@nepediatriccare.org

College Students Befriend Disabled Teens in 5 College Area

2009-01-10T14:29:00.001-05:00

College students are contributing to the success of therapeutic recreation programs at Hallmark Developmental Center in Northampton, Massachusetts.

Hallmark serves children and young adults with fragile medical conditions and severe neurological impairment. Having visitors several times during the week provides crucial social stimulation for the residents, and increases awareness in the community, according to Lisa Jakstis, Education Director.

The volunteers come from five nearby colleges --Smith, Mount Holyoke, Amherst, Hampshire and the University of Massachusetts. They interact the residents for a variety of reasons: credit, career exploration or just to “give back”, she said. Often they return for a second, third and fourth years.

Recreation Aide Isis Feliciano helps the volunteers plan fun and games to enrich each resident’s quality of life and to reinforce some of the functionality individuals work on in school or day habilitation programs.

“We know the residents are enjoying these activities because they laugh and make more of an effort to stay awake when they know (the students are) coming in,” Isis said.

The UMass Boltwood Project has been sending volunteers to Hallmark for more than 20 years. UMass Psychology major Melissa Huey volunteered two semesters before she became a coordinator for the service organization. Why does she do it?

“The experience gives me a different perspective on my own life,” she said.
To learn more about volunteering at Hallmark, contact Lisa Jakstis at LJakshtis@northnh.net

Grant Expands Family Circle Services

2008-09-22T16:43:00.001-04:00

Family Circle's Sunday Respite Program added an Adaptive Aquatics instructor and more extensive Music Therapy and Art Therapy in June, thanks to a grant from the Carl and Ruth Shapiro Family Foundation.The two-year grant provides $30,000 per year to expand recreational opportunities for young adults with disabilities.
"We are very excited to be able to respond to parents" requests for aquatic therapy in our Sunday Respite program," said Doreen Cummings, one of two Family Circle coordinators. Adaptive Aquatics is more beneficial than unstructured water play, she said, because it improves strength and mobility.
The Shapiro grant also pays for additional supplies and instruction for art and music therapy sessions, and increases program capacity.
Presently, up to 15 individuals can participate in the three-hour sessions held at the Leventhal-Sidman Jewish Community Center in Newton, MA. Families must make advance reservations and pay a nominal fee.
Jewish Family & Children's Service of Boston operates the Sunday Respite program for H.A.L.O.'s Family Circle and was responsible for obtaining the grant. Contact Family Circle at (781) 647-5327 or familycircle@halofoundation.org

Artist Makes Nursing Home Look Like Home

2008-09-22T16:40:00.001-04:00

Nursing homes can seem sterile places. An artist at a pediatric nursing home in Massachusetts is making one facility a bit more homey.

Recreational aide Theresa Munnis is creating a portrait gallery of residents at New England Pediatric Care (NEPC) in North Billerica.

When she is done the faces of more than 50 young people with complex medical needs and severe neurological impairments will welcome visitors through the main entrance.

The gallery was the brainchild of Anthony Terrasi, a designer hired to move the institutional décor “to the next level.”

“This is a residence – a home – for kids. What home doesn’t have pictures of its children?” says Anthony. “Theresa creates amazing likenesses – she brings out their soul!”

Theresa typically spends just one to three hours sketching an individual in pencil. She has worked at NEPC for 12 years and known many residents since her childhood when her father and brother worked there.

NEPC Executive Director Ellen O’Gorman became aware of Theresa’s talent when she began to draw portraits to give to families whose children had
passed away. The director subsequently involved her in beautification projects at the nursing home.

“We want to create an atmosphere that is whimsical but not juvenile, so that both residents and staff feel good when they are here,” O’Gorman said.

Other NEPC enhancements include new paint and cheerful flags to identify classrooms and offices. A resident’s family recently initiated a “Tiles for Smiles” campaign to provide ceiling art for the pleasure of residents who spend hours reclining in bed or in wheelchairs.

For information call (978)667-5123 or visit: http://www.nepediatriccare.org./

Long Term Care for Children

2008-09-22T16:38:00.000-04:00

Pediatric long term care is different from geriatric care. Both may require complex medical care, but many children in nursing homes require extensive support from the very beginning of their lives.

Unlike geriatric residents who were once fully functioning adults, children must also be educated and need support to develop social and life skills.

For the first time, professionals have introduced guidelines to ensure quality long term care for young people.

A 14-member team representing a variety of pediatric disciplines and facilities across the U.S. spent nearly six years developing the guidelines which were presented to more than 180 professionals at the April 2008 conference �Navigating the Care of the Medically Fragile Child� in Atlanta, GA .

�The needs of children in long-term care today are starkly different than those of older adults,� said Ellen O�Gorman, Executive Director of New England Pediatric Care in Massachusetts, and one of the guideline authors. �Most will be dependent on others throughout their lives. These young people need life skills - habilitation �more than rehabilitation.�

Thirty years ago, pediatric homes were populated mostly by individuals with developmental disabilities, O�Gorman said.

As community based-options were developed for those individuals, their beds were filled by children rMonday, September 8, 2008 0:04 AMstaining equipment such as ventilators and feeding tubes and intense therapeutic intervention to survive.

As individuals �age out� of state-funded support in pediatric homes, O�Gorman said the new guidelines will provide a critical framework for determining which adult options will best meet the needs of each individual.

Call Ellen O�Gorman at (978) 667-5123 or email eogorman@nepediatriccare.org

Teens Befriend Socially Isolated Children

2008-09-22T16:24:00.000-04:00

Friendship Circle celebrates friendship and makes it happen for Central Massachusetts children and families who are socially isolated because of physical, emotional or behavioral disabilities.

H.A.L.O. visited with a happy group of families at a recent barbeque sponsored by the Jewish Chabad of Westboro, MA. This fledgling group organizes monthly events for families and recruits, trains and matches teenage volunteers to be supportive friends to children who have a disability.

�Our goal is to make these children and their families feel more integrated with the community,� said Rabbi Yaron Kimelman, who oversees Friendship Circle with his wife Yona Rivka. �This experience enriches the lives of everyone involved, from the teenagers who learn about the power of giving to the children who get to experience the fun of friendship.�

�We now have over twenty amazingly devoted teen volunteers and a growing number of families who are seeking friendship for their special needs children," the rabbi said.

Families do not need to be associated with Chabad � or even be Jewish � to take participate in activities with more than 100 independent Friendship Circles across the United States and Canada. Children with a wide range of disabilities are welcome.

What do Teens and Families say?

(Pseudonyms have been used to maintain anonymity.)

Andrew�s mom: �I guess I was surprised to find out that there are actually teenagers who want to do this kind of thing. I have two sons on the autism spectrum, and am always looking to make connections for them . . . Andrew is great with adults, but has trouble interacting with kids, and transitions can be very tough. I always feel people are staring at us. At the picnic he made quite a scene; last week it was at the grocery store. David�s visit each week gives me a break from keeping Andrew occupied.�

David, 14: �I go to the Academy of Mathematics and Science, and was just looking for something different to do. I found out I really enjoy playing with Andrew. I feel like I am helping someone.�

Michael�s mom: �It�s nice for Michael to be with someone who isn�t going to make him learn something or answer questions. Two teenagers alternate weekly visits, and this gives Michael two new friends. He is not a kid who plays well with his peer group so it�s less stressful for him to be with an older child who will give him some slack.�

Hank, 14: �Sometimes Michael can be challenging, but I have learned what to do to keep him calm. (When Michael scraped his toe while climbing on rocks at the beach, Hank redirected his attention to avoid an outburst, then gave him a piggyback ride to the first aid station.) I didn�t know I would like this. It�s turned out to be a great opportunity to work with people I like and care about.�

Rita�s mom: �Friendship Circle is very good for my daughter Rita. For the first time she has a friend she can laugh with and share secrets. Most other children don�t know how to communicate with her. Her �friend� makes an effort.�

For information about the Westboro Friendship Circle, contact Rabbi Yaron Kimelman at (508) 410-3831 or visit www.fc.chabadwestboro.org.