A proposed change to statewide regulations may ease the path toward special education services for Alaska students with fetal alcohol spectrum disorders by expanding the range of professionals who can diagnose the condition, according to medical and special education professionals.
Under current regulations, students are eligible for special education services, in part, if a physician diagnoses them with a health impairment that adversely affects their performance in school. The change would broaden that for FASD to include diagnoses from advanced nurse practitioners certified in psychiatry or family practices. Some said they want the proposed changes to go even further.
Marilyn Pierce-Bulger called the current regulations "incredibly outdated." Under state law, medical doctors or doctors of osteopathic medicine must make the diagnoses for a list of what the federal government calls "other health impairment" that renders a child eligible for special education services.
Pierce-Bulger is a family nurse practitioner and the owner of FASDx Services, a referral and coordination agency for the Anchorage FASD Diagnostic Team, which has advanced nurse practitioners but no medical doctors, she said.
"There are a large number of advanced nurse practitioners now providing primary care and specialty care for a variety of patient populations and also making some of these same diagnoses," Pierce-Bulger said.
The change would better reflect the medical needs of Alaska, she said, where there has been a longstanding shortage of physicians. "They're too busy," she said. "They're sending us the business. They're supportive and the nurse practitioners have really stepped up and been interested in doing this."
An FASD evaluation can take several hours over several days. It can involve multiple medical professionals, including, in the case of the Anchorage team, a nurse practitioner, psychologist, speech language pathologist and occupational therapist.
According to data from the state Department of Health and Social Services, each year more than 126 children born in Alaska are at risk for FASD -- an umbrella term describing a variety of birth defects and disabilities caused by a mother drinking alcohol while pregnant.
Last week, the Anchorage FASD Diagnostic Team had a list with about 100 people waiting for an evaluation, Pierce-Bulger said. Without a physician on staff, sometimes schools accept the team's diagnoses and sometimes they don't, she said.
Classroom accommodations vary widely for those with FASD symptoms, she said, "because the brain-based injury is so incredibly different child to child." Some students may have trouble taking notes. Others may have visual perception issues and struggle to transmit information off the classroom board, she said.
Christie Reinhardt, program coordinator for the Governor's Council on Disabilities and Special Education, said an eighth-grader with FASD, for example, may be forgetful or have a short attention span. The child may learn something one day and wake up the next morning and have completely forgotten it.
"It's because of the holes in the brain," she said. The council had made the initial request for a change to state regulations after families brought the problem to its attention, she said.
But Reinhardt wants the regulation changes to go further and apply to all diagnoses listed under "other health impairment," which include heart conditions and attention deficit disorder or ADD.
"It's getting closer but it's not quite right," she said. "It needs to be a bit broader."
She said students should be eligible for special education services if their diagnosis comes from any physician, advanced nurse practitioner or physician's assistant under the direction of a physician as long as it's within the professionals' training and scope of practice.
Dr. Melinda Rathkopf, a partner at the Allergy, Asthma and Immunology Center of Alaska, said the regulation change should be broadened to include pediatric nurse practitioners with training in diagnosing and evaluating FASD. Rathkopf, board certified in pediatrics, said Alaska doesn't have nearly enough physicians with training in evaluating and diagnosing FASD to meet the state's need.
"Whatever makes it easier for children to receive services that are needed," she said.
Susan McCauley, state director of the Teaching and Learning Support division, said the intent of the regulation change is to broaden the group of people who can diagnose FASD for the purpose of referral for special education services.
"It's simply an attempt to mitigate what might be overly restrictive in terms of our current language," she said. She said the state must walk the line between broadening access and ensuring that local school districts can implement the regulations.
Lucy Hope, director of student support services at the Matanuska-Susitna Borough School District, said the diagnosis is only one part of the eligibility process for students to receive special education services. The Mat-Su district provides those services for roughly 2,600 students, she said.
About the proposed regulation change, she said, "I think that it will allow families to have more options for health care providers for children."
If the State Board of Education and Early Development passes the proposed regulation change, FASD will join the list of other health impairments with heart conditions, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, diabetes, ADD and attention-deficit hyperactivity disorder.
The state education department is taking public comment on the regulation change. Written comments are due to the department by 4:30 p.m. Oct. 30. Oral comments will be taken at the Anchorage School District's board room the morning of Dec. 10.