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Chronic Problems with Chronic Care

Are children with disabilities and chronic illnesses getting the services they need?

* First in a series of articles examining health care and education for children with disabilities and chronic conditions.

Santi Bhagat has spent the last 10 years as a full-time caregiver for her chronically-ill daughter, Natasha.

That's almost a quarter of her life, and more than half of Natasha's, and Bhagat, a physician who lives in Potomac, is still trying to get it right.

Natasha, now a senior at Winston Churchill High School, contracted a mosquito-borne encephalitis on the first day of Bhagat’s medical fellowship when Natasha was 8. She was hospitalized for months, at times lapsing into a coma.

Natasha recovered from the illness, but has suffered chronic effects ever since. She is epileptic and easily fatigued. She needs speech therapy and has had bouts of amnesia. Her medications cause severe side effects.

Bhagat stopped working and made caring for Natasha a full-time job. She served not only as nurse and teacher, but also as medical coordinator, juggling physicians and specialists, hospital evaluations and insurance claims.

“It took us four years to figure out what’s going on and then it took us another four years to get her proper health care,” Bhagat said. Natasha missed a year of school in the process.

Bhagat’s experience raised difficult questions. By most accounts, Bhagat had every possible advantage in navigating the system. She was educated and financially secure, in a two-parent family. She owned a home and had parents who assisted in caring for Natasha and her twin brothers. She had high-quality insurance that didn’t require referrals to see specialists. She had the luxury of giving up work to care for Natasha full-time.

Perhaps most significantly, she was a doctor, someone who understood the inner workings of the medical world.

“In spite of that I found we just couldn’t get her quality health care,” Bhagat said. “I thought, ‘What does this mean?’”

THAT'S A QUESTION a lot of parents of children with disabilities are asking.

In October, Potomac parent Jocelyn Schaffer reached the Supreme Court in a dispute over her son’s special education services. She said that her goal in pursuing the case for more than seven years was to assist a voiceless population of parents fighting the system.

The system, in Schaffer’s case, was Montgomery County Public Schools, and the voiceless population was the roughly 13,000 Montgomery County families that have children with disabilities.

Schaffer’s attorneys argued that school systems should have to prove that they have provided adequate services for special education students, rather than forcing students’ families to show that the services are deficient; a principle they said was consistent with federal special education law.

But Schaffer lost the case in a 6-2 Supreme Court decision last month. MCPS hailed the decision for upholding a presumption of good faith among educators and barring litigious parents from costing school systems millions.

The special education community saw something else — an affirmation of what several special education parents called a “father knows best” attitude from MCPS.

“We’ve got choice all over MCPS. We’ve got the magnet programs, the signature programs, the immersion programs,” said Bob Astrove, a Rockville resident and special education parent for more than 15 years. “In 'special ed' the choice is: You do what we say or you take us to court. That’s what’s wrong.”

Special education was “in the closet” for decades, Astrove said, and many parents believed they were the only ones fighting the schools. Laws still prevent school systems from identifying special education students to outsiders — including other special education parents. Consequently, “For parents to connect with other parents of kids with disabilities, you’ve … got to do a little work,” Astrove said.

Parents have begun to find one another, largely thanks to the Internet and the spotlight cast by Schaffer’s case.

THEY SAY THEY feel trapped in an adversarial system where they have to fight for the child’s health care and education and that managing the child’s needs often becomes a full-time job.

The gauntlet of managing doctors, hospitals, insurance companies, before- and after-school care, schooling and more takes a toll.

"Every part of the lives of the family members is sort of geared toward trying to maintain ... the family as opposed to just falling apart in crisis," said Judith Levy, director of the Department of Social Work at the Kennedy Krieger Institute in Baltimore.

Every family at Kennedy Krieger meets regularly with a member of Levy's department.

Families with special-needs children have higher divorce and bankruptcy rates than other families, though the higher incidence has been exaggerated, according to Levy.

Siblings of children with special needs often feel neglected or fall behind in school, while parents expend resources on the special-needs child.

“It’s really a mess,” Bhagat said. "That's the bottom line. It's a mess."

BHAGAT BEGAN STUDYING health policy and found that other people whose children had chronic conditions — all doctors — faced the same problems that she did.

Last year, she started Physician Parent Caregivers Inc., a nonprofit organization to help parents secure quality health care for children with special health care needs. The group’s first goal is to assemble a Web portal compiling resources for parents of children with disabilities, mental conditions and chronic illnesses. The portal will focus on Montgomery County, but Bhagat hopes the on-line resources — and the group — will eventually expand statewide and nationally.

Bhagat said that the connection between her problems and the Schaffers’ aren’t casual. They are symptoms of the same broken system of care. While medical care and education should be closely coordinated, they are governed by separate bureaucracies, doubling parent caregivers’ workloads.

“There’s such a divide between Health and Human Services and Department of Education, at the federal level,” Bhagat said.

Kennedy Krieger works with both departments at the state level and Levy agreed that they are "very separate" and that the coordination of services is the biggest issue facing special-needs families.

"It’s a financing issue. Coordination of services is not paid for by insurance. It doesn’t matter whether you have private insurance or medical assistance — It's not paid for," she said. "You’re the least able to manage it yourself, yet nobody else pays for it. ... That’s the failure in the system."

Large-scale policy changes may be necessary, but Bhagat hopes to start addressing care coordination locally.

"One of our hopes is to be able to bring together physicians — pediatricians — and educators together to make sure they make a good decision for the child," she said. "Now with this [Supreme Court] decision it’s got to go in that direction. We can’t rely on the schools anyway because they have financial issues and bureaucratic issues.”

BHAGAT IS a doctor who couldn’t overcome the hurdles in the medical system, and Schaffer is an educator who was also trained as an attorney and couldn’t overcome the hurdles she faced in the educational and legal systems. Both women pointed out that their struggles came in spite of their relative financial security. Poorer families and minorities fare worse, Bhagat said.

Astrove cited the high school assessments that all MCPS students, beginning with current ninth-graders, will have to pass to earn a diploma. Special education students, except those with severe cognitive disabilities, have to take them too. Currently about one-third of special education students are passing the tests. About half of white students pass them; among African-American and Hispanic special education students, one in 10 passes, according to Astrove.

BOTH BHAGAT and Schaffer are happy with the services their children are now receiving. But at what cost?

“How much time do you invest in all of this?” Bhagat asked. “The couple — how do they survive? In the health care world we’ve seen a tremendous impact on the families. … They’re at very high risk for bankruptcy, divorce and ill-health themselves.”

Bhagat said that she felt she had neglected her twin sons during the years that she was constantly caring for Natasha and that healthy siblings often suffer as a result of their parents’ struggle to care for a special-needs child.

The special needs child can get lost in the mix too.

“We want to make sure that the child has more time to live their life the way they’re supposed to live it — to make sure they have a childhood,” Bhagat said.

CHEN ELLIOTT can appreciate that.

As a fifth-grader in 1999, Chen seemed to have a constant case of the flu. When she began losing her balance, her mother took her to Children’s Hospital.

Doctors found a brain tumor the size of a small egg.

Chen had a list of medical factors in her favor: the tumor had not attached to other cells and had not affected her spinal fluid. She was a good candidate for surgery and she had the tumor removed just three days after she was diagnosed.

Chen’s mother, Lynda Elliott, did fund-raising for Children’s and one of the nation’s top neurosurgeons operated on Chen. The surgery was a success.

But it didn’t end there. Chen had to undergo six weeks of radiation and chemotherapy, which are punishing to a young body, then a brief rest, then another round.

There were constant blood transfusions which she found “gross.”

There was losing her hair, which may not be easy for anyone, but for an image-conscious fifth-grader seemed like the worst part of the whole ordeal.

“I actually questioned the doctor about my hair,” said Chen, now a junior at Connelly School of the Holy Child in Potomac. “I was really ticked off at the fact that they had to shave off my hair and the back of my head to do the surgery.”

Chen laughs at that now, but even as she made a recovery most would call miraculous, she began to understand that there were parts of her childhood, her life, that she would never get back.

“I used to hate the disease, what it did and how it made me. I kept telling myself, ‘When I finish all this, I’m going to play soccer [again],’” she said. “I was totally lying to myself. When I came back I was different. My hair didn’t come back right away. My eyes were messed up. I had to kind of accept who I had changed to be.”

Chen gave up soccer and running and took up sailing. She left her old private school, which refused to accommodate her new limitations and found Holy Child, which both Chen and Lynda Elliott called a blessing. But even when she could accept her new self, friends couldn’t.

“I lost a lot of friends. They didn’t know what to do with me,” she said. She recalled being excluded from a fifth-grade party that all her classmates had been invited to — one that she would have been invited to before cancer.

“I will never forget it because I was just hurt so much by it,” she said. After that, “I didn’t want to know anyone I knew before cancer. I wanted to start over.”

HOLY CHILD SOLVED many of Chen’s problems. She did start over, not only with new, accepting friends, but with a school that said it would do whatever it had to do to help her graduate.

The school has left morning periods open for Chen, who has trouble beginning her days, and has given her accommodations like extra time on tests. It helps her customize physical education classes for her abilities. (“I couldn’t play dodge ball. Being hit with a ball in the back of my head — that was not going to be a good idea.”)

Chen is now an honors student, planning to attend college.

But both Chen and Lynda Elliott recognize the same issues as Bhagat and Schaffer. What if they hadn’t found Holy Child? What if they couldn’t afford it? If it was this bad for them under good circumstances, how bad is it for others?

“It comes down to that whole IEP thing … but on a large scale,” Lynda Elliott said. “It can be devastating to a kid’s self-esteem if they’re in environment that doesn’t recognize these are not made-up situations.”

Chen added, “You just have to find the right fit and what’s going to work for you.”