Guiding Severely Disabled Young Adults to a New Life

Taking care of the complicated medical needs of a severely disabled child can be overwhelming. Parents might be tube-feeding their child, running the machines that allow the child to breathe, monitoring any heart problems, and helping with toileting and bathing. It can be a struggle to manage all these daily needs while meeting the requirements of the rest of the family. When the disabled child becomes a teenager, it can seem impossible to find the time and energy to start looking for adult providers.

The Special Needs Transition Program - a new collaboration between Children's Hospital of Wisconsin, The Medical College of Wisconsin, and Froedtert Hospital - will help children with multiple medical problems make the move from pediatric to adult care.

"These are kids with extremely complex needs," says Tammy Fennig, RN, MS, PNP, who serves as the coordinator of the pilot program. "They're severely impaired."

The program is structured as a four-year pilot study in which eight to twelve patients per year, who are currently receiving their medical care at Children's Hospital, will be guided through the process of changing over to adult practitioners at Froedtert.

Each year half of the participating children will be chosen from the existing special-needs program at Children's Hospital and half will be chosen from the hospital's Home Tracheostomy/Ventilator Program. (A tracheostomy allows patients with severe respiratory problems to breathe through an opening in the neck; a ventilator is a mechanical breathing device.)

The children who were chosen to participate in the program were already working with at least five subspecialist doctors in areas such as cardiology, endocrinology, neurology, gastroenterology, pulmonary medicine, and genetics. All participants are current patients and no more can be accepted at this time.

There are a multitude of reasons why kids present with such complicated multi-system issues, says Fennig, but most often the problems are congenital. Their health issues have been with them - and their families - since the day they were born.

"Our goal is to enroll patients from a cross-section of socio-economic statuses, diagnoses, financial situations, and family structures," Fennig says. "We want to get a sense of what it's like for people who have different resources available. What is it like for a single mom? What is it like for people from different walks of life?"

A Necessary Step
Why is this transition of care needed? "If you think in terms of normal development for kids without disabilities, by the time they turn 18 years old their pediatricians are saying to the parents, 'we need to find an adult provider for your child.' There are reasons for this from a developmental perspective. In pediatrics the system of care is very different, very family-centered. In adult medicine, autonomy and independence and patient-centered care are what's valued."

It's a fairly new problem. Twenty years ago, children with these diagnoses simply didn't live into adulthood. Adult providers often have not worked with patients with severe, complex disabilities, and might be uncomfortable agreeing to assume their care.

Fennig explains that some catch-up work will have to take place while the program is being initiated. "In a perfect world, we'd start planning and preparing families for transition at 14 or even younger. You start preparing teenagers for independence at developmentally appropriate ages by asking them general questions during their appointments - 'how's it going, how's school, how do you feel?'" By having them answer questions about their health as they age, you are helping them become the drivers of their own care."

Although a completely independent life won't be possible for most of the young adults in the Transition Program, they will become partners in their own health care to the greatest extent possible.

"The problem is that our current participants, the first group of patients that we're transitioning, are now 19 to 23 years of age. They're past the age when the move to independence should have begun, but the systems weren't in place for them," notes Fennig. "When you read the literature on transition, there are programs in the country that deal with specific one-disease entities such as diabetes, cystic fibrosis, or asthma. But the kids that we're dealing with are multiply handicapped." There are few, if any, established programs that facilitate this transfer.

Creating a Model for Continuing Care
Without specific methods to transfer medical information and records to new doctors and establish continuity of care, communication can easily break down between health care providers. The interruption of care can cause medical and emotional setbacks for patients and families.

"This is one of the primary reasons for starting this project - to try to develop a model for transitioning this most complex population. The goal of the project is to come up with something that will be sustainable and replicable by the end of four years."

The Plank Road Clinic (a Primary Care clinic of Froedtert & The Medical College) has agreed to be the primary care site for this pilot group of patients.

"We know the health care providers the kids are seeing at Children's Hospital, and we systematically work with the providers at Froedtert, presenting the patient's information and helping to build treatment plans. I accompany the family on the first visit with each subspecialist to make introductions and make sure that everything is understood on both sides." All the doctors involved will see patients during the transition phase.

Social Transition
In addition to the medical part of the Transition Program, Fennig will be closely involved with plans for education and community living. "I'll be connecting with the school district, attending all the IEP (individualized education plan) meetings and discussing transition plans, education plans, vocation plans, and community living. There is a legal mandate that schools are responsible for transitional living skills. If we build strong connections with the schools, it's going to make those changes easier."

Fennig will also communicate with social services about funding options, including those through the county, state, Medicaid, Medicare, and community agencies.

It sounds like a tough job for anyone. Fennig is not only willing but fully able to perform it. She started working at Children's hospital years ago as a floor nurse, moved to home care when she felt the need to provide continuity in her patients' lives, and, after gaining her Master's Degree as a Pediatric Nurse Practitioner, worked in developmental pediatrics and neurology.

A Lifetime of Experience
Fennig's close relationships with her patients became even more personal when she brought home her foster child Tyann at age 14. She had been taking care of her as a home-care nurse since Tyann was five years old. Her parents became unable to care for her and she went to live with her aunt, who died unexpectedly of breast cancer. "The family didn't have a plan for where she was going to go after her aunt died. I said we would take care of her until a plan could be made, but there never was a plan, so she was with us for 7 years," she says.

Tyann was learning disabled and hearing-impaired. She was non-verbal - they communicated with her by sign language - and had low muscle tone and chronic lung disease. An enlarged tongue made swallowing difficult and she was fed through a gastrostomy tube directly into her stomach. She was on continuous oxygen, breathing through a tracheotomy tube during the day and requiring a ventilator to breathe at night. Academically, she functioned at a third-grade level.

Providing a home and health care for Tyann would seem far too difficult for many people who don't have the skills that Fennig does. Not so, she says. "I think that it's within reach for a lot of people, it's just a matter of seeing what's possible. It's a matter of being able to see people's capabilities.

Help is available for families who are taking care of severely disabled children at home, Fennig notes, but working through the system can take a lot of effort. "Parents have to be advocates, and they have to learn to navigate," she says. "I can tell you in talking with schools and in interviews with potential employers, I continually had to say, 'it's ok, she'll be safe, we won't put her in any situation where she won't be safe'. They were worried about the medical piece. I kept saying, 'she deserves every opportunity.' You have to advocate in order to open doors."

The Katie Beckett Program allows certain children with long-term disabilities or complex medical needs, living at home with their families, to obtain a Wisconsin Medicaid card. The program provides financial assistance for families of children who require a level of care at home that is typically provided in a hospital or nursing facility. It was this kind of help that allowed Tyann to have a nurse with her at school.

"She was in high school until she was 21; she graduated and got a job as a teacher's aide aid for hearing-impaired kids. She also got into a supported apartment where she was living with two roommates, with nursing staff that came in during the day to assist her. She was making an income and doing wonderfully," says Fennig.

In November of 2004 Tyann had sudden cardiac arrest and died. "But she reached all of her goals before she left," Fennig says. "She's the reason I'm here. It's part of what led me to this job.

"It's important to for parents to know I have been in their shoes. I've been there as a parent, I've been there as a nurse, I know what they are going through, I know how scary it is. It's my life's work, I think, in terms of paving the way for other kids."

Eileen Early, BA, BSN, RN
HealthLink Editor

MCW Health News presents up-to-date information on patient care and medical research by the physicians of the Medical College of Wisconsin.