JOINT SENATE AND HOUSE HEALTH, EDUCATION AND SOCIAL SERVICES COMMITTEES February 17, 1993 3:00 p.m. SENATE MEMBERS PRESENT Senator Steve Rieger, Chairman Senator Bert Sharp, Vice Chairman Senator Loren Leman Senator Judy Salo SENATE MEMBERS ABSENT Senator Mike Miller Senator Jim Duncan HOUSE MEMBERS PRESENT Representative Con Bunde, Co-Chairman Representative Gary Davis Representative Harley Olberg Representative Tom Brice Representative Irene Nicholia HOUSE MEMBERS ABSENT Representative Cynthia Toohey, Co-Chairman Representative Al Vezey Representative Pete Kott Representative Bettye Davis COMMITTEE CALENDAR Presentation by the Governor's Council on Disabilities and Special Education WITNESS REGISTER ERNEST DUMMANN, Chairman Governor's Council on Disabilities and Special Education 6701 Greenwood Street, #1 Anchorage, Alaska 99518 SUSAN LOUDON Governor's Council on Disabilities and Special Education Fairbanks, Alaska 99701 JANELL MEADE Inter Agency Coordination Council 1030 `B' Juneau, Alaska 99801 JOE WINDERS 800 `F' Street, C-2 Juneau, Alaska 99801 LESLIE YAMAMOTO, Member Governor's Council on Disabilities and Special Education P.O. Box 83496 Fairbanks, Alaska 99708 DAVID JACOBSON ACCESS Alaska 3550 Airport Way, #3 Fairbanks, Alaska 99709 DAVID MALTMAN, Executive Director Governor's Council on Disabilities and Special Education Department of Health and Social Services P.O. Box 240249 Anchorage, Alaska 99524-0249 DR. JILL WHEELER, Chairperson Interagency Coordinating Committee Governor's Council on Disabilities and Special Education Anchorage, Alaska ACTION NARRATIVE TAPE 93-13, SIDE A Number 001 CHAIRMAN RIEGER called the Joint Senate and House Health, Education, and Social Services Committees meeting to order at 3:10 p.m. He announced the committee would be hearing a presentation by the Governor's Council on Disabilities and Special Education. ERNEST DUMMANN, CHAIRMAN, GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION, explained that the council acts as an advocacy group for the needs of the disabled population in the state of Alaska. He noted the council also gives recommendations to policy makers. Mr. Dummann said he has a son, Shawn, who is severely disabled, operates at an age two level, and will require some assistance or help from the community for his entire life. Mr. Dummann introduced Susan Loudon. SUSAN LOUDON said she and her husband live in Fairbanks. Her son attends the University of Alaska-Fairbanks, and her sixteen year old disabled daughter, Crista, lives at home. Ms. Loudon explained that her daughter experiences epilepsy, mild cerebral palsy, and episodes of paralysis every eight to ten days. The services she has received over the years have been designed to meet her specific needs. She noted Krista is part of the first Project Teach Early Infant Learning Program. Krista, while attending regular classes in a private school, received physical, occupational and speech therapy. In junior high school she began prevocational training at a day care center. Now, as a high school junior, she is on the honor roll and benefits from an individualized curriculum which focuses on her unique strengths and abilities. Supportive services includes a wheel chair, a computer, educational respite care, and individual care during the time that she is paralyzed. Ms. Loudon said as Krista transitions into adulthood, the goal is to see her included in the community, working and enjoying life with her friends and family. MS. LOUDON said she hopes the committee will meet Krista next month during the Key Campaign. Communities all over the state are working towards making individual services available to people with disabilities. Ms. Loudon said new strategies to improve the delivery of services are on the horizon and will have to be considered by the legislature. For example, providing vouchers for families to shop or to contract for services would give individuals opportunity to be included in their community life. MS. LOUDON said many hours have been spent working with individuals and groups throughout the state. The flood of reports, studies, white papers, analysis, and position papers have been condensed to provide the legislature with a working document. She said the council's recommendations will be helpful in making informed decisions which affect the policy area. In conclusion, she said she is encouraged that as we meet the challenge to communicate, care and to change, as put forth by Governor Hickel in his State of the State Address, Alaska's families will be able to improve the quality of life allowing for full inclusion of people with disabilities in their own community. JANELL MEADE was next to come before the committee. She explained that she gave birth to a daughter, Heather, last November. She has a rare genetic condition known as "Prouder Willie Syndrome." Ms. Meade discussed how the Infant Learning Program has done so much for her family. Heather also receives respite care. She said the programs have really helped her family. Number 193 JOE WINDERS was next to come before the committee. He introduced his son, four year old Steven, who was born three and a half months too soon and weighed 1.5 pounds. He said there wasn't much of a chance of him living but he pulled through with the intensive medical care he received from Providence Hospital. Steven did loose his sight and hearing and they are not sure if he will ever walk. Mr. Winders explained his family has received great benefits from the Infant Learning Program, as they taught him and his wife how to deal with a handicapped child. He explained that Steven cannot hear, therefore, he cannot speak. The help received from Medicaid has been wonderful. Mr. Winders said Medicaid will deduct from benefits if he makes more than $1,000 per month. His family is slowly going into debt. Mr. Winders explained he was released from the hospital around New Years with pneumonia which cost $5,000. He said he is applying for charity to pay his bill. Mr. Winders said he hopes legislation will pass so that he can earn what he must to live and still be covered by Medicaid. Number 250 LESLIE YAMAMOTO, MEMBER, GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION, explained she has been on the council for two and a half years and is a parent of a six year old child, Stewart, who is severely developmentally delayed and has a secondary diagnosis of autism. She explained he has participated in the Infant Learning Program and made remarkable gains that he couldn't have made without the weekly input. Stewart is currently developing at a level that was never thought possible. She informed the committee that he has been in special education for three years and is continuing to develop and make gains. Ms. Yamamoto said she and her husband also appreciate the help from the Respite Care Program. MS. YAMAMOTO referred to Mr. Winders' problems and said the council has been working on a program called Project Choice. She said Project Choice was created by the legislature to explore Medicaid options and waivers. The options and waivers could pay for home and community support of people with disabilities and the aging. She referred to the achievements of Project Choice and said they have made application to the federal government for four waivers. The first waiver would serve 102 children with complex medical conditions who qualify for hospital or nursing home care. The second waiver would serve 92 people with developmental disabilities who qualify for the institutional level of care. The third waiver would serve 30 adults with disabilities who would qualify for the nursing level of care. The fourth waiver would serve 124 adults, age 65 or older, who qualify for a nursing home level of care. The program is currently in need of four staff people to be trained and to administer the program. The program is a program that would use federal dollars which are currently used for people in institutions. What the program is asking is to reroute the dollars, at a tremendous savings, and keep the kids at home. Ms. Yamamoto thanked the committee for listening to her testimony. Number 334 DAVID JACOBSON, of Fairbanks, informed the committee that he experiences a disability that happened in his adulthood. He said he has a traumatic brain injury. He said he feels he represents about 2,000 other individuals in Alaska who have had a similar experience. Many people with brain injuries are capable of being productive members in our society; however, in Alaska the programs don't exist to assist them. He discussed counseling and emotional support that is needed for many people. Mr. Jacobson said he was fortunate that he was given the opportunity to go back to work through the Independent Living Program, which is a type of service where individuals are encouraged to develop their independent living skills and to be productive in a system that gives flexibility. He discussed problems in funding the Independent Living Program. Number 386 REPRESENTATIVE BUNDE requested more information on the options and waivers. SENATOR ELLIS referred to Ms. Yamamoto's testimony regarding the need for four staff positions for the Project Choice Program and said he had thought the request was for five positions. He asked where the extra position is in the budget. DAVID MALTMAN, EXECUTIVE DIRECTOR, GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION, DEPARTMENT OF HEALTH AND SOCIAL SERVICES, indicated that he would forward the information to Senator Ellis. SENATOR ELLIS referred to SB 5, which relates to Medicaid waivers and options, and said it brings on waivers and options more expansively and it could happen at an earlier time frame than what Project Choice is proposing. Number 404 REPRESENTATIVE BRICE said it is his understanding that there are waiting lists around the state for the Infant Learning Program. He asked if it was true and, if so, where. MR. MALTMAN explained that the history in funding the programs is such that in many areas those programs are fully funded for a certain segment of children. In other areas of the state, the service doesn't exist. In most areas of the state, children are being underserved. (Mr. Maltman's testimony was hard to hear as he was answering from the audience). SENATOR SALO asked how people find out about the Infant Learning Program. She also asked what needs to be done to improve the equity of availability throughout the state on Infant Learning Programs. DR. JILL WHEELER, CHAIRPERSON, INTERAGENCY COORDINATING COMMITTEE, GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION, noted she also works at the University of Alaska, Anchorage, and her primary roll at the university is in personal preparation in early childhood special education. She explained that there isn't a single point of entry. Parents can be referred by physicians, a neighbor, or anyone. Dr. Wheeler referred to Senator Salo's second question and said she believes the Governor's Council on Disabilities and Special Education, though its charge as the Interagency Coordinating Council, is developing a program of early intervention services. It is a system of all the services that can be provided to children and families across the state of Alaska. She continued to discuss the early invention system as to how it will be developed and who will participate. Dr. Wheeler indicated she would send both House and Senate HESS Committees their position paper. SENATOR SALO indicated that she would also like more information on Project Choice. Number 467 There being no further business to come before the committee members, CHAIRMAN RIEGER adjourned the meeting at 3:45 p.m.