JOINT HOUSE AND SENATE HEALTH, EDUCATION AND SOCIAL SERVICES COMMITTEES February 10, 1995 9:05 a.m. HOUSE MEMBERS PRESENT Representative Cynthia Toohey, Co-Chair Representative Con Bunde, Co-Chair Representative Norman Rokeberg Representative Caren Robinson HOUSE MEMBERS ABSENT Representative Al Vezey Representative Gary Davis Representative Tom Brice SENATE MEMBERS PRESENT Senator Lyda Green, Chairman Senator Loren Leman, Vice-Chairman Senator Johnny Ellis Senator Judy Salo SENATE MEMBERS ABSENT Senator Mike Miller COMMITTEE CALENDAR Presentation by the Council on Disabilities and Special Education. WITNESS REGISTER LESLIE YAMAMOTO, Member Governor's Council on Disabilities and Special Education P.O. Box 83496 Fairbanks, Alaska 99708 POSITION STATEMENT: Explained the duties of the Governor's Council. KATHLEEN SOGA Governor's Council on Disabilities and Special Education P.O. Box 20082 Juneau, Alaska 99802 POSITION STATEMENT: Explained her life before and after TEFRA. JANELL MEADE Governor's Council on Disabilities and Special Education 1030 B Street Juneau, Alaska 99801 POSITION STATEMENT: Discussed the Infant Learning Program. NANCY DODGE, Member Governor's Council on Disabilities and Special Education 1751 Elcadore Drive Anchorage, Alaska POSITION STATEMENT: Addressed the increasing number of children needing services. SUSAN LOUDON, Member Governor's Council on Disabilities and Special Education 118 Kathryn Avenue Juneau, Alaska 99801 POSITION STATEMENT: Discussion of the possible elimination of the hold harmless clause in the permanent fund legislation. ERNIE DAMMANN, Member Governor's Council on Disabilities and Special Education 4744 Klondike Anchorage, Alaska POSITION STATEMENT: Explained the Strong Family Initiative. KATHLEEN FITZGERALD, Member Governor's Council on Disabilities and Special Education 4521 Southpark Bluff Drive Anchorage, Alaska POSITION STATEMENT: Emphasized the need for the hold harmless clause to remain for disabled persons. ACTION NARRATIVE TAPE 95-3, SIDE A Number 002 CHAIRMAN GREEN called the Joint House and Senate Health, Education and Social Services (HESS) Committee to order at 9:05 a.m. She gave the floor to the Governor's Council on Disabilities and Special Education. LESLIE YAMAMOTO, a parent from Fairbanks on the Governor's Council, explained that this council is a federally mandated planning council for developmental disabilities. She noted that the council serves as the Early Intervention and Special Education Advisory Panel. The Governor's Council consists of 26 members of which 13 are consumers or secondary consumers, parents, and the other 13 are providers of services. The council is required by federal and state mandates to plan, evaluate, and promote services. The council also reports to the legislature on the budget and the state of the state's effect on developmentally disabled individuals. MS. YAMAMOTO felt that discussions with families and providers throughout the state had given the council a grasp on the issues before them. Families desire help to keep their families in tact and not to institutionalize their loved ones while using available resources wisely. Ms. Yamamoto pointed out two areas in which these resources could be used more prudently: continued downsizing of Harborview and streamlining the Medicaid system. MS. YAMAMOTO addressed the council's budget plan which attempts to serve more people in more diverse means with less money. Directing funding to community and family support programs would decrease the need for a crisis driven system that is the current practice. She noted that the population needing these services is increasing as well as the waiting list. Although the $2.5 million request of the council would increase the number of individuals served, there will still remain many to serve. She extended appreciation to the committee in passing waivers and options which have promoted family preservation. Number 112 KATHLEEN SOGA informed the committee that her 10 year old daughter, Chelsea, has spina bifida. She noted that her family has benefitted from the change in the state definition of developmental disabilities and the TEFRA option. Before TEFRA, the family was financially strapped due to expensive co-pays of their medical insurance. She noted that even her state insurance did not cover everything. After all the assistance programs said that she made too much money to qualify, two options remained: quit working and become a dependent of the state or give her daughter up to foster care. MS. SOGA pointed out that TEFRA was the first support program for which she qualified. TEFRA affords the luxury of some free time and most importantly, the ability to care for her daughter at home. Ms. Soga stated that TEFRA has allowed her and her daughter to remain an independent family. TEFRA provides financial medical relief and personal care attendants. The personal care attendants assist in meeting the needs of her daughter at crucial moments such as mornings and afternoons when we need assistance. Ms. Soga expressed appreciation for this program and implied the need for it to continue. SENATOR ELLIS inquired as to the length of time the waiver process took for her. MS. SOGA stated that the process was rushed due to her crisis situation; the process took three and a half weeks. SENATOR ELLIS asked if that was typical of other waivers. He noted complaints that the waiver processes was lengthy. KATHLEEN SOGA said that the waiver process can take a long time. Number 218 JANELL MEADE, a mother of three girls, recounted the first weeks of her Heather's, her youngest daughter, life. Heather has a rare genetic condition. After contacting the Infant Learning Program (ILP), the family was provided with speech, physical and occupational therapists trained to work with special needs infants and their families. She noted the importance of her occupational therapist coming every day. MS. MEADE informed the committee that there are 20 Infant Learning Programs in Alaska who served 2,600 families in Alaska last year, however, a wait list of 461 families of developmentally delayed infants and toddlers remains. Approximately 3,400 Alaskan infants and toddlers require ILP services. She pointed out that half of the children on the wait list for these services are located in the Yukon-Kuskokwim Delta where 40 of 1,000 children experience fetal alcohol syndrome, 60 times the national average. Alaska has the second largest birth rate in the nation. MS. MEADE stated that the legislature has cut the ILP's budget by $400,000 over the last two years; Alaskan children are suffering. She emphasized that the early years are critical in a child's development. For many children, early intervention can eliminate or greatly reduce the need for costly long-term services. The council suggests a $3,368,500 increase in order to meet the needs for Alaskan infants and toddlers and their families. She was appreciative that her daughter, Heather, was born during a time in which life in a community based setting, not an institution, was viewed as more satisfactory to the consumer with less cost to the state. She expressed the desire to have the same hopes and dreams for all her daughters no matter if they are developmentally disabled. Number 300 NANCY DODGE, Chair of the Education Committee of the Governor's Council and Special Education Service Agency (SESA) Board member, informed the committee that SESA has passed an audit. She suggested that SESA become an agency and the sunset period be lifted. She explained that the numbers of children needing services are increasing due to the influx of dysfunctional families. There is a high frequency of alcohol, drug, physical and sexual abuse. She noted that statistics show that 40 percent of the children in the Yukon-Kuskokwim area have been exposed to alcohol during pregnancy. Ms. Dodge said that part of the role of the Governor's Council is to provide advice to different agencies as well as being an advocate. The council has recently incorporated traumatic brain injured children into their services, which increases the number of special education children. Accidents, alcohol abuse, modern technology and emotional disturbances have increased the number of special needs children. She reiterated the council's request for additional funding. Most children receiving early intervention will leave the system, especially those children with emotional disturbances who would normally go through the mental health or corrections system. She urged the committee to review the special needs children when reviewing welfare reform. Number 376 SENATOR SALO asked if there was any discussion about serving adults with similar needs as the low incident children that SESA serves, especially when both the adult and the child are in the same area. MS. DODGE said that combining services does occur. For example, a vision specialist coming into a village trains anyone in the area interested. SESA focuses on in-depth training of people, family preservation, and keeping service in the community which would allow adults to receive help. However, an individual over the age of twenty-two seeking a specific service would fall under a different organization. CHAIRMAN GREEN inquired as to the number of individuals ILP serves. JANELL MEADE said that approximately 2,600 people are being served. NANCY DODGE clarified that these children are being served for a variety of needs other than fetal alcohol affected children. REPRESENTATIVE TOOHEY asked what the percentage of fetal alcohol affected children are in the group of children receiving services from ILP. NANCY DODGE did not believe that such alcohol affected children were the majority. CHAIRMAN GREEN expressed interest in the number of hours that ILP requires. NANCY DODGE explained that ILP is a very individualized program. Ms. Dodge said that in Bethel, a specialist usually goes out on a monthly basis. Ms. Dodge concurred with Chairman Green that individuals may only need an hour a month. ILP also trains the extended family. REPRESENTATIVE CON BUNDE stated that he understood that early intervention for an autistic child may require up to 40 hours a week in order to achieve proposed goals. NANCY DODGE specified that intensive programs mentioned by Kathy Fitzgerald at a previous meeting are not currently offered in ILP in Alaska. Those one on one models of intensive programs are very effective. REPRESENTATIVE ROBINSON cited a case in Juneau in which a mildly autistic child with attention deficit disorder remains in the main classroom. The child is experiencing abuse by the other children. What could be done to assist the teachers and students of this classroom? NANCY DODGE explained that SESA does training throughout the extended family and the community. Such training should be available through other specialists as well, interagency overlap should occur for the child. REPRESENTATIVE ROBINSON asked where a parent in Juneau should go to receive assistance. NANCY DODGE said that the parent should be approached by someone; if no one approaches the parent, then the school district should be contacted. There are agencies such as Advocates Service for children who have been diagnosed by the school as a special needs student and are not receiving the proper service. REPRESENTATIVE ROBINSON inquired as to where a parent could find materials for a child who is not severely autistic. NANCY DODGE informed Representative Robinson that there is an Autism Society in Anchorage and Juneau as well as a program at UCLA. Dave Thomas is the Director of Special Education in Juneau. KATHLEEN SOGA indicated that each school should have a counselor with the ability to give sensitivity training in the classroom. Number 474 SUSAN LOUDON, mother of three children, related the story of her 18 year old who becomes paralyzed every eight to ten days for up to five days at a time. ILP helped with her daughter and the family until the age of three. At age twelve her daughter was enrolled in public school where she received speech therapy, physical therapy and occupational therapy. She noted that her daughter now does all the things they were once told she would be unable to do. At age fourteen, her daughter was diagnosed with epilepsy, mild cerebral palsy as well as the paralyzing disability. MS. LOUDON expressed gratitude that her daughter had received highly individualized services because everyone is unique. She stated that when her daughter was twelve, the family admired her abilities and desires not her disabilities. After her daughter expressed interest in child care, her daughter worked in child care and is now an aide in the public school. The individual help that her daughter, Christa, has received gives her a different lifestyle experience than most. Ms. Loudon specified that her daughter benefits from SSI, Medicaid and Public Assistance. Her daughter wants to be a part of the community earning her own way. MS. LOUDON called the committee's attention to the pending legislation which would eliminate the hold harmless provision of the Permanent Fund Dividend. She voiced support for able-bodied individuals to work, while recognizing that disabled individuals are not able-bodied and need support. She explained that in her community they try to utilize parents as resources in order to meet the needs of the community's disabled individuals. She noted that there is a behavior management system, MANDT, which is not taught to parents, only professionals. In order for a parent to receive MANDT training, the parent must go through an agency who trains their professionals in this technique. This could help many families in Alaska. Ms. Loudon addressed the co-pays of Medicaid; disabled individuals cannot deal with the Medicaid co-pays. That can lead to individuals not taking their medication and ending up on the streets which would eventually increase costs to the state. REPRESENTATIVE ROBINSON clarified that Ms. Loudon seemed to imply that eliminating the hold harmless provision would negatively effect a large group of disabled individuals because these disabled individuals would fall under the able-bodied individuals who should be working. MS. LOUDON felt that eliminating the hold harmless provision was a good idea for able-bodied persons, but there should be an allowance in the legislation. In the long run, a blanket elimination will cost more. SENATOR ELLIS directed Ms. Loudon to Senator Frank who knows everything about the Medicaid legislation. TAPE 94-3, SIDE B Number 571 ERNIE DUMMANN, Chairman of the Individual and Family Support Committee on the Governor's Council on Disabilities and Special Education, addressed the growing number of developmentally disabled individuals on the wait list. Currently, there are more than 500 such individuals on the wait list for services. Since the legislature has not appropriated funding for the new demand of the wait list, the numbers on the wait list continue to increase. The council is reviewing a new policy, the Strong Family Initiatives. The council's budget document requests additional funds to cover the Strong Family Initiatives which would serve those on the wait list before they are in a crisis situation. MR. DUMMANN told a story of a family with two boys, the youngest of which became developmentally disabled at age seven. The boy began to regress and lose the ability to walk and talk as well as having screaming fits. The family went to the provider community and asked for assistance, but there were no services available because there were no funds. The family continued to try to deal with their situation for about three more years. Finally, the stress was too much and the family was forced to give up their child in order that he could receive services and the rest of the family could be saved. Mr. Dummann expressed shame to inform the committee that this was his family's story. Mr. Dummann said that families with disabled children want to keep their family in tact and not have to give up their disabled child. MR. DUMMANN pointed out that the legislature shares in his shame because the legislature represents all the families of Alaska. He emphasized the need for services for developmentally disabled individuals and the number of families have increased and must be dealt with. The problem will not go away and without funding the problem will worsen. He urged the committee to act immediately before hundreds of families are caused to fail due to legislative inaction. CHAIRMAN GREEN asked Mr. Dummann to describe the Strong Family. ERNIE DUMMANN explained that in Alaska the delivery system for developmentally disabled services have always been crisis driven. The lower and middle part of the wait list never get served and will not until they reach a crisis state. The Strong Family Initiatives would attempt to serve 225 individuals on the developmentally disabled wait list with a broad scope of care. MR. DUMMANN stated that this initiative would require $2.5 million in funding. This initiative would not address the most severe needs such as foster care. He pointed out that even with funding, the wait list will contain over 300 persons. There must be an ongoing commitment to the community and families by the legislature. Number 475 KATHY FITZGERALD, parent of a severely disabled child, told the story of her disabled friend, Gracie. Gracie's parents are dead and she has no one; that is a fear that Ms. Fitzgerald indicated she had about her daughter. When there were Medicaid cuts Gracie could not receive dental or vision care. MS FITZGERALD recognized the need to review Medicaid; individuals able to be productive should be working. She emphasized the need during reform to continue the hold harmless clause for those who cannot take care of themselves. Currently, community based services are doing much for this situation. Ms. Fitzgerald indicated her hope that cuts do not lead to placing disabled persons in institutions. Institutions are very cost ineffective and morally devastating. SENATOR SALO asked if the majority of Alaskans share the view that the government should care for persons least able to care for themselves. KATHY FITZGERALD felt that Alaskans did share this view, but many do not seem to understand that most people receiving welfare are like Gracie. REPRESENTATIVE ROBINSON expressed the need to communicate the problems revealed by the council regarding the hold harmless clause. There are difficulties in determining who is the most needy today and who is tomorrow. KATHY FITZGERALD specified that prevention is the key to all situations, whether assistance is needed due to socio-economic reasons or disabilities. CHAIRMAN GREEN thanked everyone for their information. There being no further business before the committee, the meeting adjourned at 10:10 a.m.