JOINT HOUSE & SENATE HEALTH, EDUCATION & SOCIAL SERVICES COMMITTEE March 13, 1996 8:35 a.m. SENATE MEMBERS PRESENT Senator Lyda Green, Chairman Senator Johnny Ellis Senator Judy Salo SENATE MEMBERS ABSENT Senator Loren Leman, Vice-Chairman Senator Mike Miller HOUSE MEMBERS PRESENT Representative Cynthia Toohey, Vice-Chair Representative Con Bunde, Vice-Chair Representative Tom Brice Representative Caren Robinson HOUSE MEMBERS ABSENT Representative Al Vezey Representative Gary Davis Representative Norman Rokeberg ALSO IN ATTENDANCE Representative Kim Elton COMMITTEE CALENDAR Presentation by "Key Campaign" WITNESS REGISTER The following Key Campaign members related their personal experiences with various programs: Mary Jane Michael 2421 Wellington Anchorage, Alaska 99517 Lynette Haas PO Box 2434 Soldotna, Alaska 99669 Honnen McLeod 6908 E 16th #A Anchorage, Alaska 99504 Emily Ennis 5743 Chilkoor Drive Fairbanks, Alaska 99709 John Minano 805 Airport Road Fredricks, Alaska P. J. Carpenter PO Box 84392 Fairbanks, Alaska 99708 Kristy Pollard PO Box 1715 Ward Cove, Alaska 99928 Rob Klee 401 Windfield Anchorage, Alaska 99515 Terry Landall 3781 Cottonwood Way Wasilla, Alaska 99654 John Street 6486 Laser Anchorage, Alaska 99504 Lois Welch PO Box 835 Kenai, Alaska 99611 ACTION NARRATIVE TAPE 96-18, SIDE A Presentation by "Key Campaign"  Number 001 CHAIRMAN GREEN called the Joint House & Senate Health, Education and Social Services (HESS) Committee to order at 8:35 p.m. and invited the first speaker forward to begin the presentation. MARY JANE MICHAEL, Key Campaign member, began by noting that this is the ninth year of the Key Campaign. She believed that community based programs for people with developmental disabilities have a proven record of making a difference in the way government operates. State government wants services to be delivered to people throughout communities, stimulating rural economies, and community involvement. Currently, 33 nonprofit organizations provide services and support to over 2,100 people with developmental disabilities as well as their families in over 170 communities throughout Alaska. Ms. Michael pointed out that 100 percent of the community developmentally disabled programs support 708 non state positions in rural and urban Alaska. Today people can remain with their families in their own communities while receiving the necessary and critical supports and daily life skill opportunities. She acknowledged that State government is constantly seeking quality and cost effective services and programs; community based programs have achieved that. Ms. Michael informed the committee that costs have decreased from a high of over $25,000 per person to $13,827 per person which is no comparison to institutional costs that exceed $150,000 per year. She noted that state government wants welfare reform, "get people off the dole," which could happen with community based programs. If families are assisted in staying together, costs are reduced, the family is healthier and allowed to continue to work. Furthermore, the community grows and expands with the richness of diversity and the community's economy is stimulated with community based programs. Over the past nine years, Key Campaign has advocated system change which has contributed to savings for Alaska. The development and implementation of the Medicaid waiver programs has allowed Alaska to recapture valuable federal dollars to finance what was once funded entirely by Alaska. Moreover, the closure of Harborview Developmental Center will result in the savings of millions for Alaska. Ms. Michael believed that the legislature and the Key Campaign have made progress in these issues while providing families the quality supports they need and want. However, there are still 658 people on the waiting list for community services. For no additional funding, these individuals on the waiting list can be served by the savings realized from the closure of Harborview Developmental Center. Ms. Michael emphasized that the closure of Harborview illustrates the continuous efforts to deinstitutionalize Alaska while providing a higher quality of life in the community. Also the savings realized through the process of refinancing home and community based waivers could be used to serve those on the waiting list. Ms. Michael explained that federal funds offset the cost of services which were once funded entirely by the state; this can save the state one half of the current cost of services. The state money that is freed by the federal funding can be used to serve those on the waiting list. Ms. Michael stressed that the 658 on the waiting list for community services is the highest in Alaska's developmental disability history. Many of those waiting have been on the list for over four years. If families are diverted from the wait list or need is met when it first surfaces, the cost for services would be significantly cheaper than responding to a crisis driven system. Ms. Michael pointed out that the estimated savings for this year could serve 100 of those on the waiting list. Ms. Michael asked for a maintenance of effort of two and a half percent for existing community programs and services. Ms. Michael quoted the following from a letter from the Mental Health Trust Authority: "A double standard has been set when certain cost increases for state agencies are funded, while no cost increase for nonprofit organizations that provide direct services to people are funded and in some cases decrements are taken. Additionally, when Medicaid waivers came on-line in Alaska the state work force expanded by over 10 positions to handle the new system while community agencies who are responsible for assimilating the system, getting people refinanced on the waiver, and constructing a new billing system with increased demands were given no new personnel." Ms. Michael reiterated that no additional money would be necessary with the two and a half percent maintenance effort. Community makes sense fiscally and programmatically, we all win with community. Number 175 LYNETTE HAAS introduced her 14-year-old daughter, Katie, to the committee. She discussed her daughter's success with the programs in which she has been involved. Katie's first success was with the Infant Learning Program. Currently, Katie is receiving services from Difficulty in Care. Ms. Haas pointed out that because of the services offered, her family has stayed together. Katie began using the services when she was three. Ms. Haas felt very fortunate and yet guilty for receiving services when so many others in need were waiting. She hoped that the committee could see that returning the savings from the closure of Harborview to the programs would be in the state's best interest. REPRESENTATIVE TOOHEY mentioned the response to the first announcement of the closure of Harborview three years ago. There are a few people in Harborview who will continue to need special care. Representative Toohey emphasized that the closure of Harborview is necessary and the financial savings will be tremendous. LYNETTE HAAS reiterated that the savings from the closure of Harborview could help many more people in the meantime. REPRESENTATIVE TOOHEY emphasized that change is difficult to accept. LYNETTE HAAS agreed and said that for this population time is very important. Ms. Haas was certain that if Katie had to wait four years, her family would not have survived. Number 224 HONNEN MCLEOD, from Anchorage, said that she was representing parents in need of respite care. Ms. McLeod indicated that Catholic Social Services have helped greatly with her baby and her 18-year-old. Catholic Social Services take the stress off of families; the stress of caring for a disabled child is an incredible burden. The statewide waiting list for Catholic Social Services' respite care is approximately 216 families of which 40 are in Anchorage. Ms. McLeod noted that her daughter is one of the 40 from Anchorage on the waiting list. Quality respite care is difficult to find because these children cannot be sat by a next door teenager. Respite care allows parents to have time alone; it keeps families together. Ms. McLeod wished that the legislators could see the work that Catholic Social Services does. With the savings from Harborview and the waiver refinancing, the quality respite care could be continued without any additional cost. Number 270 SENATOR ELLIS pointed out that the savings from the closure of Harborview are not automatically applied to the waiting list and services for the DD community. The legislature must specify in the budget that those savings will be used for the DD community. HONNEN MCLEOD echoed Representative Toohey's statement that change takes time, but someone should come forward to make that change. With this group of legislators, it can be done. REPRESENTATIVE ROBINSON asked Ms. McLeod to discuss the waiting list. HONNEN MCLEOD, speaking from her own experience, said that her 18-year-old has been on a waiting list for Independent Living with minimal supervision since she was 16. After going to the Department of Mental Health and Developmental Disabilities in order to determine why the process was taking so long, Ms. McLeod had her reassessed. Her 18-year-old was bumped up to a wait of 27 months after the assessment. Ms. McLeod offered to provide the committee with the actual number of people on each waiting list. Number 309 EMILY ENNIS, Fairbanks Resource Agency (FRA), informed the committee that FRA realized the need to employ persons with developmental disabilities about 30 years ago. The organization sought funds to provide support, funding from the Division of Vocational Rehabilitation was obtained as well as the Division of Mental Health and Developmental Disabilities. Vocational services has proven that the employment of those with disabilities has a positive outcome; it is welfare reform. Vocational services have proven that individuals with disabilities can learn and hold responsible jobs. Such services have helped these people obtain good wages and eliminate the need for financial support in many cases. Ms. Ennis emphasized that vocational services provide dignity and status for these people. Vocational services are cost effective, the state has saved thousands with such services. Ms. Ennis pointed out that inadequate funding in communities have prevented vocational services from achieving full potential. Currently, 336 adults are on a waiting list for vocational supports. This is the state's largest waiting list. Ms. Ennis asked the committee to remember that 336 are waiting for jobs, and could be working with vocational supports. Savings from the waivers and the closure of Harborview could provide the necessary funds for vocational services. Ms. Ennis asked that these savings be kept in DD community services and that work not welfare is supported. Number 370 JOHN MINANO, from Fairbanks, informed the committee that he had been with FRA for 10 or 11 years. He emphasized that those on the waiting list should not wait any longer. All those on the waiting list should have jobs to earn a little spending money to have some fun. Mr. Minano wanted all those on the vocational services waiting list to be helped and the children to be well and grow up. He thanked the committee. P.J. CARPENTER introduced her son, Josh, to the committee. Her son has cerebral palsy and cannot walk. Ms. Carpenter was told to institutionalize her son when he was one-day-old because there would be less stress on her daughter. If Ms. Carpenter had not been strong at that time, her son would be one of the 658 on the waiting list. She informed the committee that her son had been on a waiting list to modify the house by constructing a ramp into the house. This ramp gave her son independence to enter and exit the house as desired. The services her son has received from FRA, Access Alaska, and Hope Cottage have allowed Josh to live as normal a life as possible. If she could, Ms. Carpenter said she would invite all the legislators to her house. Ms. Carpenter informed the committee that her son is also on a waiting list for independent living because she has been informed that the process could take anywhere from two to four years. The closure of Harborview is estimated to save $150,000 per person per year. Allowing that money to return to such services to modify homes could help. Without the legislatures help, Josh will be another statistic, another name on the waiting list. Number 460 KRISTY POLLARD, from Ketchikan, thanked the committee for their support of the TEFRA option to Medicaid. The TEFRA option helps with medical and travel expenses. Her daughter had six surgeries in the first year and a half of her daughter's life. Ms. Pollard informed the committee that her daughter incurred a quarter million in medical expenses. She and her husband were both working, but taking so much time off for all the surgeries left her fearful of losing her job as well as the medical insurance received through that job. She discussed the tremendous stress involved with having a disabled child. Ms. Pollard referred to the first year and a half as the first house the couple could have purchased. The TEFRA option sounded wonderful and a huge burden was lifted when her daughter received the TEFRA option. A few months after receiving the TEFRA option, she was able to quit her job and stay home with her daughter who has only been sick once this year and the medical expenses have decreased. Her daughter receives services from the Infant Learning Program which has helped. Ms. Pollard reiterated that the TEFRA option has saved her family. Number 512 ROB KLEE, from Anchorage, introduced his daughter, Jordan. She has Down's Syndrome. At first, the diagnosis of his daughter's disability shattered many of the dreams for her. Eventually, Mr. Klee realized that his daughter would reach most of her dreams, even if those dreams took time. The hospital informed Mr. Klee about the Infant Learning Program which has been a very successful experience. Mr. Klee believed that his daughter is advancing much quicker due to the Infant Learning Program. The Infant Learning Program consists of a one hour visit with a therapist each week. The program has taught Mr. Klee and his wife how to help Jordan reach her dreams. Mr. Klee noted that he and his wife were able to contribute payments on a sliding scale to the program because both of their employers offer health insurance. He expressed concern for the future and for others who are not as lucky as his daughter. In conclusion, Mr. Klee urged the committee to accept the Governor's recommendation to keep the Infant Learning Program in tact and increase the budget by $150,000. TERRY LANDALL thanked the committee for last year's budget, but increased funding is needed. There are 29 on the Infant Learning Program waiting list in Wasilla alone. In the Valley, 54 developmentally disabled are on the waiting list and 254 in Anchorage. Mr. Landall pointed out that teachers in these programs are being paid less than those in public schools. These teachers are working with their hearts. If a child is worked with at an early age, the child will become a productive member of the community. Without the teachers or the funding for the program, a portion of the community is lost. Mr. Landall discussed the cost effectiveness of keeping children at home versus institutions. With extra funding, the teachers would not have to save items that others throw away in order to teach the children. With extra funding, motor skill toys could be purchased. Mr. Landall emphasized that Alaska should be the first frontier in taking care of the children in the community. He urged the committee's support of all budget increases in all disabled programs. JOHN STREET informed the committee that his three-year-old daughter, Annie, was born with Fetal Alcohol Syndrome (FAS). TAPE 96-18, SIDE B Mr. Street said that the early intervention that his daughter received will probably allow her to eventually live on her own. The Infant Learning Program was the first program Mr. Street's daughter utilized. Mr. Street emphasized the lack of education for normal students regarding what really causes some of these disabilities. FAS should not exist. Through 1974, doctors were saying that drinking would not hurt an unborn child. Number 564 Mr. Street discussed respite care. For the first 18 months, Mr. Street's wife could not leave their daughter. When alcohol is present in the womb, no bonding takes place. His daughter's liver was born accustomed to living on the sugar in alcohol and therefore was not performing properly. His daughter was not expected to live. Respite care was necessary. Currently, his daughter will not sleep alone and sleeps with he and his wife every night. Mr. Street reiterated that no extra money is needed, just the money that is already available. If this money needs to be designated for this then lets do that. With early intervention, education and more community homes, the costs will be decreased. LOIS WELCH informed the committee that her daughter, Angie, was born with Cerebral Palsy. Ms. Welch and her family lived in Texas before moving to Alaska. Her daughter was at home until the age of 12 when she was placed in an institution which was six hours away. Ms. Welch became depressed. During that time, her mother-in-law invited her to Alaska. When she visited Alaska, she also visited various agencies and programs. Ms. Welch returned to Texas ready to move to Alaska. The family moved to Alaska hoping to move Angie as soon as possible, only to discover that there was a waiting list. She discussed her daughter's time in the institution where she was confined to a wheelchair for about 10 hours a day. Her daughter slept in a caged bed in an institution with 80 other non ambulatory children. After much effort, Ms. Welch's daughter was moved to Alaska. When her daughter arrived in Alaska she could no longer stretch out her legs. Since her daughter has moved to Alaska, she has grown by leaps and bounds. The services of Alaska have given Ms. Welch hope for her daughter. However, there are 658 others who do not have hope. She noted that this was the first time that she had been face-to-face with legislators; she was pleased to see that they were attentive to the witnesses. On behalf of those families that could utilize the services provided by the savings from the closure of Harborview and the waiver refinancing, think of giving them hope for the future. CHAIRMAN GREEN thanked everyone for their testimony. There being no further business before the committee, the meeting was adjourned at 9:37 a.m.