ALASKA STATE LEGISLATURE SENATE HEALTH, EDUCATION & SOCIAL SERVICES COMMITTEE  March 21, 2001 1:40 p.m. MEMBERS PRESENT  Senator Lyda Green, Chair Senator Jerry Ward Senator Bettye Davis MEMBERS ABSENT  Senator Loren Leman, Vice Chair Senator Gary Wilken COMMITTEE CALENDAR  BUILDING BRIDGES CAMPAIGN Jan McGillivary, Coordinator David Roquet, Anchorage Mary Messner, Barrow Tracy Barbee, Anchorage Vic Dull, New Stuyahok Bob Miller, Fairbanks Robert Bower, Kodiak Mr. Doug Feet, Craig ACTION NARRATIVE TAPE 01-27, SIDE A  Number 001 CHAIRWOMAN LYDA GREEN called the Senate Health, Education & Social Services Committee meeting to order at 1:40 p.m. Present were Senators Ward, Davis and Green. She asked Ms. Jan McGillivary from the Building Bridges Campaign to address the committee. BUILDING BRIDGES CAMPAIGN  MS. JAN MCGILLIVARY informed committee members that the Building Bridges Campaign is holding its eighth annual fly-in to Juneau. Building Bridges is a group of mental health consumers, family members, providers and advocates working to continually improve community based services. She informed committee members that the presenters would introduce themselves. MR. DAVID ROQUET, a mental health consumer, informed the committee that a recent government survey has found one in four Americans to have a mental illness. Mental illness must be treated like any other illness. He is the operations manager for the Alaska Mental Health Consumer Web (AkMHCW). With a state grant, AkMHCW is putting consumers to work using a clubhouse- setting run by and for consumers. AkMHCW helps consumers work on their choices to receive services in their communities. Many of its clients are homeless people who are running away from "the system" because of its high level of coerciveness. Some clients have been in and out of jail and referred by the mental health court; others have been in the Alaska Psychiatric Institute (API). Although the AkMHCW does not provide treatment, AkMHCW staff has dealt with mental illness and is trusted by clients. AkMHCW has found it very important to coordinate with all of the agencies in Anchorage. MR. ROQUET said that API serves a vital need; it is a place for people to go who need help. He urged legislators to get the API project "off the table" so that a new facility can be built. He pointed out that in conjunction with API, the community outreach programs work. AkMHCW has numbers to prove that it keeps people out of API because they have somewhere else to go. AkMHCW is open 8 a.m. to 5 p.m., seven days per week and will soon be open until 8 p.m. AkMHCW has heard from people around the state who want a similar organization in their locales. MR. ROQUET said the website name is AkMHCW.org. AkMHCW helps people find housing, jobs and choose health care professionals. He noted that AkMHCW has found consumers to be resourceful if they are given choices. MS. MARY MESSNER, a Public Health nurse from Barrow, read the following testimony. My name is Mary Messner. My home has been Barrow for about nine years. I've worked most of these years as a public health nurse specializing in children with special needs. I am also a consumer and the mother of a consumer. I'm here today because of the great need in our state for services for children and adolescents. Undiagnosed brain disorders in children and adolescents are common. Inadequate sub-optimal treatment of child and adolescent mental health disorders is also common. Studies show that some 60 percent or more of children in the juvenile justice system suffer from undiagnosed brain disorders. For a person with bipolar disorder, also known as manic depression, the average length of time it takes to get correctly diagnosed and treated, from the time they begin to seek help, is eight years. As the Surgeon General has informed us, most children in our schools with serious emotional disturbance, i.e., brain disorders, do not get identified until after age 10, if then. So what do we need? As a state, we are abysmally behind in school-based health clinic services which provide health care, including mental health care by child and adolescent specialized mental health clinicians in collaboration with other specialists like child psychiatrists, developmental pediatricians, child psychologists. We have a wonderful statewide public health nursing system, which reaches all of the villages in our state. We need to integrate mental health services into the system in the form of psychiatric nurse practitioners, which have prescriptive authority by virtue of their specialized education and licensure. We need to aggressively recruit child and adolescent specialized mental health providers, offering incentives such as 100 percent loan repayment. We need to grow our own. We also need legislation that prevents schools from labeling kids with services excluding diagnoses, such as conduct disorder, without referring for a complete diagnostic work-up by a child psychologist or a developmental pediatrician. Thank you for your time today. MS. MESSNER explained that in the past, she has worked with a child psychiatrist and a developmental pediatrician and has advocated in schools for the needs of kids with mental health diagnoses as diverse as attention disorder or minor depression. Conduct disorder is an educational diagnosis made by a school psychologist who excludes the child from receiving specialized services because the child is deemed to be socially maladjusted rather than mentally ill or needing help. CHAIRWOMAN GREEN asked if such a diagnosis is made by a school psychologist who observes a student in a classroom and that it is not a medical term. MS. MESSNER said the educational diagnosis is not a clinical diagnosis. CHAIRWOMAN GREEN asked Ms. Messner how pervasive the problem is. Number 738 MS. MESSNER said she can only speak for the school district in which she lives, but she believes the problem is nationwide. CHAIRWOMAN GREEN asked Ms. Messner what the legal implications are for school districts and states and whether enrollment is ever forbidden. MS. MESSNER said their enrollment, in her experience, is often prevented by a series of continuous suspensions and they have no legal protection. These students are labeled as "conduct disordered," which equates to burgeoning criminal. The danger is that many disorders include behaviors that could be viewed as conduct disorders. For example, a person with untreated manic- depression can be very agitated. CHAIRWOMAN GREEN asked Ms. Messner if she feels a parent should get further testing and diagnoses for his or her child through an independent psychologist and present that information to the school. MS. MESSNER said the law says that anyone in the community who sees a child as having difficulties, which may impair their ability to learn in school, should inform the school. The school is then mandated to evaluate the child. CHAIRWOMAN GREEN asked if an appeal process exists. MS. MESSNER said parents can request an independent educational evaluation. The Department of Education's approved list of specialists contains the names of people connected with the system, so that can present problems when seeking an independent educational evaluation. Parents can also request a hearing but they would need an attorney to have any hope of prevailing at that hearing. Number 1002 CHAIRWOMAN GREEN asked if the root of the problem is with the Department of Education, the state board of education, or with the statutory definition of how children are identified. MS. MESSNER said she is very familiar with the Individuals with Disabilities Education Act (IDEA) and is a member of several disability advocacy groups. She believes the problem is not statutory. She informed the committee that on February 28, [U.S.] Senator Dan Burton held hearings on the implementation of IDEA. Senator Burton, as the grandparent of an autistic child, has been shocked at his grandchild's treatment by the school system. SENATOR WARD asked Ms. Messner to elaborate on her statement about offering 100 percent student loan forgiveness. MS. MESSNER said she raised the idea as a way to aggressively attract and "grow our own" providers. She pointed out that another issue for Alaska is cultural competence. CHAIRWOMAN GREEN thanked Ms. Messner and called Ms. Barbee to testify. Number 1142 MS. TRACY BARBEE, an Anchorage parent, read the following testimony. My husband and I struggled for many years trying to find the appropriate help for our 14-year old bi-polar, ADHD, learning disabled son. Our biggest struggles have regarded the school district and the medical, psychiatric and therapy professions. In our circumstance, and in many others I'm aware of, we've found the schools at a loss in their attempts to deal with mental health issues in children. Many of the districts seem to be genuinely concerned, however most lack the knowledge and experience necessary to handle children like our son. Similarly, we have found many of the mental health care professionals in Anchorage to fall short on their ability to appropriately diagnosis and treat children with mental health issues. Unfortunately, many families like ours that have to educate themselves essentially diagnosed their own children, educate the professionals and then completely oversee their children's medication issues. Over the course of five years, our son was hospitalized twice, misdiagnosed many times over, essentially kicked out of four schools, and eventually was recommended by an Anchorage psychiatrist to be placed in a long term care facility. Not willing to do that, we took him outside of Alaska to Johns Hopkins in Baltimore and finally received the appropriate diagnosis of bi-polar disorder. After getting him up to therapeutic levels on the proper medications, we have been able to move forward with his education and growth, and he is currently a successful freshman at Service High School. He is still not an easy child but loving and manageable. My son attended the Walley (ph) Center in Anchorage for 1½ years. This is a school in Anchorage for children with severe emotional and behavioral issues. During that time, I volunteered at the school and saw so many children that obviously had undiagnosed mental health issues. We seriously need an early detection program for these children. Without it, they will continue to be lost to drugs, jails, and the streets. One method of testing that is already being used in a Juneau teen center is the [National Institute of Mental Health] NIMH disk. It's an easily used computer questionnaire that is also cost effective. Please implement this or another suitable method of early childhood testing and detection. So many of our children are counting on us. A diagnostic such as this could have made a tremendous difference in my son's formative years. CHAIRWOMAN GREEN asked Ms. Barbee if the NIMH disk offers an introductory identification to be followed up with other tools. MS. BARBEE said she has seen the written diagnostic, which consists of about 40 questions. It is used as an initial screen. CHAIRWOMAN GREEN asked if the NIMH disk is also used in a physician's office. MS. BARBEE said she has seen many checklists given to her son by doctors similar to the NIMH questionnaire. To her understanding, the NIMH questionnaire is a particularly good diagnostic. CHAIRWOMAN GREEN asked Ms. Barbee if she is aware of any budget requests for the NIMH program. MS. JAN GUERTIN, a Juneau resident, said the NIMH assessment is given at the Juneau Douglas High school. The high school has been using it for about one year in conjunction with a university in New York. About 40 youth have used it. It has been well received by the Juneau school board. SENATOR WARD asked Ms. Barbee what assessment was used during her son's diagnosis. MS. BARBEE explained that after six years of doctors, psychiatrists, psychologists, and behavior modification techniques, she took him to Johns Hopkins when he was 11 after a local psychiatrist recommended that he be placed in a long-term care facility. Her son had been misdiagnosed for years. SENATOR WARD asked what tests he was given. MS. BARBEE said her son saw a neurologist and a psychiatrist at Johns Hopkins. She pointed out that the mental health professionals in Alaska are a little bit behind on understanding that children can be diagnosed with certain mental health disorders. The Johns Hopkins psychiatrist recognized the bipolar disorder right away. Ten years ago, children were not diagnosed with certain mental illnesses until the age of 16. Now bipolar disorder can be diagnosed at age 5. MS. GUERTIN indicated that the NIMH assessment uses the DSM-IV diagnoses. She noted that school districts cannot handle the entire caseload because of funding shortages so students may have to go outside of the school to private counselors to get help. CHAIRWOMAN GREEN stated that one of the things that legislators have had to look at is how each of the programs under consideration by the legislature impacts the overall picture, be it Medicaid or something else. In addition, legislators have to look at whether there is too great an expectation on the system because if services increase exponentially, cutbacks will have to occur. She said she believes the legislature has to rely on the expectation that parents have a role in the child's life. She also noted that diagnoses have become more fine tuned and are not quite as categorized as they used to be. MS. GUERTIN said she has a child who was diagnosed with autism at age 5 and at age 14 he has been classified as having Asperger's Syndrome. Like most everything, it is a spectrum disorder so the degree with which it manifests itself in a child's behavior differs from child to child. She stated that IDEA requires behavioral plans for children so that they are not kicked out of school and can receive an appropriate education. She does not believe it is working in Alaska although the situation has improved over the last 10 years. CHAIRWOMAN GREEN thanked Ms. Guertin. MR. VIC DULL, a mental health counselor from New Stuyahok, discussed the lack of village-based counselors in rural Alaska. Of the 33 villages served by the Bristol Bay Area Health Corporation, only seven have village-based counselors. These counselors serve as advocates who do prevention activities, crisis intervention, educate families, and assist other agencies, such as DFYS. CHAIRWOMAN GREEN asked Mr. Dull who he is employed by. MR. DULL said he is employed by the Bristol Bay Area Health Corporation, a non-profit organization. He explained that Dillingham has a community mental health center, which has seven counselors who travel to villages in Bristol Bay. They specialize in youth issues and anger management. A total of 14 counselors travel every two or three months, weather permitting. That schedule does not adequately serve the needs of the communities, particularly when a crisis occurs. Each community has specific needs, and it takes someone who is involved with the community to understand those needs. He asked the committee to consider funding more counseling positions for rural Alaska. CHAIRWOMAN GREEN asked how large the area is that Mr. Dull is referring to and how many people would be served. MR. DULL said the Southwest area of Alaska stretches from Goodnews Bay to Pedro Bay down to the Peninsula toward Pt. Heiden. MS. MCGILLIVARY said it is as large as the state of Ohio. MR. DULL said the area he and another counselor serve (the Nushagak River) has three main villages with about 800 people. SENATOR WARD asked Mr. Dull what role he sees for people without formal education but a desire to become a provider who live in the community and how the state can provide a mechanism to enable those people to practice. MR. DULL said the University of Alaska Fairbanks has a Rural Human Services Program in which a traditional council chooses a person from the community who, if accepted, attends a three-week training program in Fairbanks. SENATOR WARD asked how many people have attended that program. MR. DULL said of the seven counselors he spoke of, he is the only one who hasn't. SENATOR WARD asked if that program is working in other areas of the state. MR. DULL thought people from the Nome area have participated in that program. CHAIRWOMAN GREEN asked whether any agency employees, such as village public safety officers (VPSO), have been cross-trained. MR. DULL said he is not aware of any. He explained that in his community, the VPSO does some of the interventions. CHAIRWOMAN GREEN assumed they get some training. MR. DULL said he does not think they do; the local counselors give presentations to the State Troopers about conditions in the villages. CHAIRWOMAN GREEN thanked Mr. Dull. MR. ROBERT BOWERS told the committee he is from Kodiak. He was diagnosed with mental illness three years ago and has sought help three times. He is 19. CHAIRWOMAN GREEN asked if he was in school when he was diagnosed. MR. BOWERS said he was, but he was moving a lot at the time. Regarding the construction of a new building for API, he suggested that smaller units be built in communities like Dillingham so that people do not have to travel to Anchorage. CHAIRWOMAN GREEN said that moving to a large city for treatment may compound the problem. MR. BOB MILLER informed the committee that he was born with cerebral palsy and has been diagnosed with many other disorders and illnesses. He informed committee members that dual diagnosis is common among people with mental illness. He believes that many people with mental illness self-medicate with alcohol or other drugs. He is on the board of directors at Fairbanks Community Mental Health and is the vice president of NAMI in Fairbanks. He has been studying social work at the University of Alaska Fairbanks. He encouraged committee members to provide for early intervention to avoid larger problems. MR. MILLER said that treatment services for the mentally ill in Fairbanks have been inconsistent. Very few psychiatrists have spent more than a year in Fairbanks. He asked that legislators consider student loan forgiveness for social workers and mental health providers to encourage people to stay. Regarding drugs and alcohol, he referred to a recent article in Newsweek that described alcoholism as a brain disorder rather than a personality or behavioral problem. MS. MCGILLIVARY informed committee members that the Building Bridges Campaign has focused on rural issues this year. She asked that Doug Veet present to the committee. TAPE 01-27, SIDE B MR. DOUG VEET, representing the Rural Mental Health Providers Association, said one of the significant problems with the Rural Human Services Program, discussed by Mr. Dull, is that those services are not recognized by Medicaid so development and expansion of that program always comes out of local budgets and general funds. CHAIRWOMAN GREEN asked if those services are not recognized because the service providers are not credentialed. MR. VEET said that is correct. He explained that having a credentialed supervisor does not qualify the service either. He said the second thing about those service providers is that they are just as subject to job stress as other providers and, working in their own community and having no escape becomes a problem. He believes that having only one provider in each community will not work because those providers would be overwhelmed. SENATOR WARD asked how many of the 12 regional non-profit Native organizations have such a program. MR. VEET said he would provide that number at a later date. CHAIRWOMAN GREEN thanked all presenters and adjourned the meeting.