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Home, Sweet Hospital

The Boston Globe Magazine
Mind and Body / By Richard Saltus
June 7, 1998


Although he needed tube feeding, constant oxygen, treatment for seizures, and round-the-clock attention, Scotty Luce spent the last six years of his short life at home.

Scotty’s parents, like an increasing number of parents today, took on the immense task of rendering hospital-like care at home — aided by doctors, nurses, therapists, and others involved in the rapidly growing world of pediatric home care. Their reasons are similar to the one Scotty’s mother, Patricia Luce, gives: “He needed a home environment — it was important for him to have a mom, a dad, and a dog.”

Scotty, who had a rare genetic condition that afflicted nearly every organ in his body, died in 1996. He made it only to age 12. He slept in a hospital bed and used a wheelchair; a line for nutrition led into his heart, and other tubes led to his stomach and intestines. He was cognitively impaired. Altogether, he was “medically fragile” — a description of infants and children so ill that they are living on the edge, and often only with high-tech life-support equipment.

As more and more infants survive extreme prematurity or illnesses that would have killed them in the past, families are facing the question of caring for them after the immediate crisis passes. “There’s a lot of high technology that didn’t exist in the past, and so I think as a result of that, we have a new breed of children that exist in the World today,” says Patricia Luce, who lives in Worcester. She has founded an initiative called Family Partnerships, to assist families in pulling together the sometimes widely scattered resources needed for successful home care.

Until fairly recently, children with chronic, severe conditions requiring expert care and specialized equipment “remained in hospitals and institutions, because there was no support for families or financial support to have the child go home,” says Dorothy Page, a family nurse practitioner who heads the pediatric homecare program of the University of Massachusetts Medical Center, in Worcester. She is also president of the National Association of Pediatric Home and Community Care, which she founded along with a UMass physician, Robert G. Zwerdling. The association is involved with education and research on home care of children and with setting standards.

The move toward bringing medically fragile children home stems in part from activist parents who pressed public agencies to help make home care possible. Federal Medicare and federal-state Medicaid reimbursement policies swung toward home care as new technologies and training of parents made it not only possible but cheaper for these children to stay at home. The newly available money, in turn, prompted a home-care industry that had already grown up around geriatric needs to diversify into pediatrics.

A broad range of medical conditions afflicts the infants and children who are being cared for at home. They include lung problems caused by prematurity or, sometimes, by the respiratory treatments for prematurity. Many of these children have tracheostomies — openings through the neck into the windpipe — through which they are connected to ventilators. The tracheostomies need constant attention.

There are children with infections that demand long courses of intravenous antibiotics and young cancer patients on chemotherapy. Other children can’t eat, and they get all their nutrients through tubes. The care of such youngsters can be complex, demanding, and tiring, and the impact of the entire venture on the family is enormous.

“The stress and disruption of your life is indescribable,” says Cynthia Bissell, mother of twin 4 1/2 year-old boys, Eric and Aaron, who were born 3 1/2 months premature and suffering multiple disabilities. Aaron had a tracheostomy and was on a ventilator until last summer to help him breathe.

“We live in a town house, and we had what was like a mini-NICU [neonatal intensive care unit] set up in our living room,” Bissell says. “We had nurses, physical therapists, occupational therapists, speech therapists, caseworkers, coming in and out of the house all the time. There is no privacy.”

Today, the twins attend a special-needs preschool. Eric, who has cerebral palsy, uses a wheelchair, and Aaron is receiving therapy for his speech, which was delayed because of the tracheostomy.

Even though Bissell and her husband are both nurses, she says they were initially intimidated by all the procedures they had to learn. “But you’d be amazed at how quickly parents become experts in their kids’ care,” the Grafton mother says.

Like Luce and like other parents who make such a huge commitment, the Bissells believe the rewards of caring for medically fragile children at home are great. “We feel very strongly about this,” says Bissell, who has founded a group called Families Organizing for Change that is funded primarily through the state Department of Mental Retardation. The group is aimed at generating support for families caring for children at home.

Besides DMR, other agencies involved in home care include the state Department of Public Health, Medicaid, the Massachusetts Commission on the Blind, and various private groups. Family Partnerships, in Worcester, can be reached at 508-756-7467. The National Association of Pediatric Home and Community Care, in Worcester, is at 508-856-1908.

A World Wide Web site established by Cynthia Bissell offers information about caring for children’ with tracheostomies. It is called Aaron’s Tracheostomy Page, and the address is


Teacher finds special success

Telegram & Gazette
Wednesday, May 27, 1998

‘Many schools try to give the children as little as possible. We were very concerned. But when we first brought Eric and Aaron here, we could see the Sue saw them first as little boys rather than children with special needs.’ PARENT RICHARD BISSELL

Teacher Susan M. McCullen works with Eric and Aaron Bissell during a preschool class. Photo by Mike Castagnaro
Teacher Susan M. McCullen works with Eric and Aaron Bissell during a preschool class. Photo by Mike Castagnaro

By Chris Sinacola
Telegram & Gazette Staff

GRAFTON – The fact of the matter is that Susan M. McCullen did not have to turn Eric Bissell’s walker into a “bulldozer,” to the delight of all the children in her preschool class.

But she did.

Nor did McCullen absolutely have to make sure that Eric and his brother, Aaron, took part in every class trip, such as over to the South Grafton fire station, and see that they climbed into the driver’s seat of the pumper truck like all the other kids.

But she did that, too.

Certainly, McCullen didn’t have to run to the Bissells’ home last summer to care for Eric while Aaron went to the hospital for emergency surgery.

Of course, she did.

Tomorrow, at a dinner and ceremony at the Ramada Inn in Auburn, McCullen will receive the state Department of Mental Retardation’s 1998 Excellence in Inclusive Education Award, for the preschool/kindergarten level in the DMR’s Region II, which covers Central Massachusetts.

McCullen was nominated for the award by Eric and Aaron’s parents, Cynthia and Richard, who are quick to note that McCullen has included their sons not only in her classroom, but in her heart.

Although the state’s special education law requires that all children with special needs be educated for “maximum feasible benefit,” school systems and parents do not always see eye-to-eye.

“Many schools try to give the children as little as possible,” Richard Bissell said. “We were very concerned. But when we first brought Eric and Aaron here, we could see that Sue saw them first as little boys rather than children with special needs.” Of course, they are both.

Born in July 1993, at just 23 weeks gestation, Eric and Aaron Bissell faced long odds just to survive. Meeting the special medical needs of the twins has meant years of surgeries, treatments, medication, worry, and stress for the Bissell family.

But the little boy part is blossoming.

Following surgery last summer to rebuild his trachea, Aaron is a lively, talkative 4-year-old — his latest projects include mastering the use of the bathroom, an in-depth study of washing his hands, and participating in show-and-tell. Due to cerebral palsy, Eric still has significant problems with his muscles and motor skills, but has made phenomenal progress with verbal skills in recent months.

“Everything lately is ‘That would be nice!'” Cynthia Bissell said. “We ask if he’d like to go to school or shopping – ‘That would be nice!'”

For McCullen, welcoming the Bissell’s into her classroom has been a natural extension of the educational philosophy she adapted at an early age.

“It was in eighth grade that I wrote once ‘I hope to work with children with special needs,’ ” McCullen said. “I’ve always been interested in how all kids learn, particularly the acquisition of language. I do just see kids as kids.”

Her most frustrating days of teaching, McCullen said, were in dealing with nonspecial needs, or so-called typical children, in second and third grade, whose behavior and motivation were often far less than what she sees among the Bissell’s and others.

McCullen’s preschool is a mix of special and typical children – based on the philosophy that exposing the groups to one another builds understanding from an early age, as well as helping to break down barriers and prejudices that exist in the children’s parents.
Grafton teacher succeeds with ‘bulldozer’ approach

Eric uses a special walker with wheels. To help the typical children understand Eric’s situation, McCullen named the walker a “bulldozer,” after the piece of heavy equipment that children find endearing. And it worked. With Eric’s permission, the other children even get a chance to use the “bulldozer.”

The Grafton preschool program offers a morning and afternoon session, and is popular enough that the school system must hold a lottery each year for those families who want their typical children to take part.

John McIntyre, director of family support and children’s services for DMR’s Region II, said that the work of teachers such as McCullen, and the advocacy and dedication shown by the Bissells, are an illustration of how the state, schools, and parents can and should work together.

A generation or two ago, McIntyre said, children with special needs or mental illness were shunted aside, hidden away, and rarely spoken of. Some made it into sheltered work-shops. Attitudes began to change when parents demanded that society do better, leading to the state’s land-mark Chapter 766 legislation in the 1970’s, and the 1990 Americans With Disabilities Act.

Today, McIntyre said, the benefits of inclusion are being widely demonstrated. They are breaking down barriers of prejudice and misunderstanding in adults, and allowing children to see and understand, from a very young age, that children with special needs aren’t scary or strange, but mostly just like themselves.

“This is the next step in a movement that began in Massachusetts on the order of 25 years ago,” McIntyre said. “The idea is that they become full, taxpaying citizens. A lot of these children, as they get to be 14, 15 years old, hopefully the schools will begin a transition program with them. The idea is that they get invited to birthday parties, that they become part of the neighborhood. I think the community is enhanced when we embrace kids with disabilities.”

McIntyre said the awards program, now in its second year, has provided a focus for the good work being done all over the state. A group of parents reviews applications for the awards, interviews the nominees, and votes on who the recipients will be.

For the Bissells, the experiences of the last few years have been a rigorous test of their love for one another and the strength of their family. They are passing those tests, in part by reaching out to other parents and the medical community with advice, information and support. Their anger and despair have been transformed into action and hope, they said.

The couple helped start Families Organizing for Change, a statewide support group for individuals with disabilities and their families. Richard is now executive coordinator for Central Massachusetts, and writes for the organization’s newsletter “Compass.” Cynthia works with the Family Health Support Project at UMass/Memorial Health Care.

Like many parents, their work at home is never done, but they also have begun to expand the scope of their concerns, exploring the many issues involved in helping society as a whole do right by those in greatest need.

More on the Excellence in Inclusive Education Award from our local paper, the Grafton News.


Inclusive Education Award!


Congratulations to Susan McCullen from Edward and Yvette Ropiak and Daniel Kimberly and Nicole McCullen! Susan’s family is proud to announce, that she was awarded the state Department of Mental Retardation’s 1998 Excellence in Inclusive Education Award,” for the preschool/kindergarten level in the DMR’s Region II, which covers Central Massachusetts. She was presented with the award at a dinner banquet held on May 28,1998 at the Ramada Inn, Auburn. Susan was nominated for the award by Cynthia and Richard Bissell, parents of 4 year old twins, Aaron and Eric. Due to premature births (at 26 weeks gestation), the boys have a variety of medical and developmental special needs. Eric has been diagnosed with cerebral palsy. Aaron had a Tracheostomy, which has since been repaired. In addition to surgeries, medical treatment and therapies, the boys are serviced in Grafton’s integrated preschool program for which Susan McCullen is the teacher. Being an integrated preschool, the groupings consist of some children with special needs, and more than half of the children are those with “typical development” or no special needs. The benefits of such inclusion are numerous. Most importantly, all children have a right to be educated with their peers. From an early age, children such as the preschoolers – learn to celebrate each other’s differences and yet realize how much they’re also a like. Those with special needs also benefit from inclusion with peers, as children learn so much from each other, especially language and social skills. Susan enjoys working with all children, as well as forming partnerships with their parents. Congratulations Susan on receiving this prestigious award!

Richard is the executive coordinator for Families Organizing for Change of Central MA, a statewide support group for individuals with disabilities and their families and Cynthia works with a Family Health Support Project at UMass/Memorial Health Care.

Photograph includes (from left to right) Richard Bissell, Dr. Johanna Van Houten - Superintendent of Grafton Public Schools, Susan McCullen, Margery Gagne-Director of Special Education, Cynthia Bissell, and Anthony Cipro - SGES Principal.
Photograph includes (from left to right) Richard Bissell, Dr. Johanna Van Houten – Superintendent of Grafton Public Schools, Susan McCullen, Margery Gagne-Director of Special Education, Cynthia Bissell, and Anthony Cipro – SGES Principal.

A program for disabled children to lean on


Because of their tender age, disabled children need so much more than special medical care. That’s where the Family Health Support Program, a collaboration between UMMC and the Massachusetts Department of Mental Retardation, comes in. Staffed by two family health supporters who are personally experienced with the challenges of disability, the program provides resources, referrals and, just as often, an ear to listen and a shoulder to lean on.

While similar programs have been developed by parents in the past, “Ours is the first to integrate parents of disabled children and disabled ‘self-advocates’ into the medical team,” says Martin Young, PhD, associate professor of pediatrics and program co-director. The program was launched a year ago with a pilot in the division of pediatric neurology. Beth Rosen, MD, assistant professor of pediatrics and neurology, is the program’s lead physician. After completing a medical exam, she introduces one of the family health supporters to the child and parents. The health supporter speaks with the family to make sure all their questions regarding the medical visit and prescribed medical care are answered; she further asks if they need help with other concerns, such as special education, respite care, special equipment and therapies.

“We address anything and everything. And if we don’t have the answers, we know where to get them,” says Family Health Supporter Cynthia Bissell, the mother of twins with special needs. She and fellow Family Health Supporter Sandra Milyko have found that support groups and community support are critical components.


Milyko, who has cerebral palsy, also specializes in counseling families on self-advocacy. “Self-advocates are people learning to stand up for themselves in getting basic things – from jobs to health insurance to personal support – that most people take for granted,” she explains.

At the same time they are assisting families, family health supporters are educating the medical staff. Says Rosen, “Cindy and Sandy have been well-received by patients, and have informed me and other providers about what’s available outside of UMass.”