HOUSE BILL NO. 346 An Act relating to services for persons with developmental disabilities. REPRESENTATIVE REGGI JOULE noted that the bill would address the needs of individuals with developmental disabilities and their families by requiring the Division of Mental Health and Developmental Disabilities to conduct periodic reviews of their waitlist and by requiring an annual report to the Legislature and Governor regarding the same. Representative Joule noted that recently, there have been more individuals with developmental disabilities requesting services than there are available resources. In 1989, the Division of Mental Health and Developmental Disabilities started a waitlist for those individuals. The waitlist is the Division's way of prioritizing individual requests. Presently, there are 786 people on the developmental disabilities waitlist with 333 on the Infant Learning Program waitlist. The Hess Committee Substitute makes minor changes to the original bill and the title was changed to more accurately represent the purpose of the bill. The second amendment changes Section 1(d)(3) by deleting language that the Division would not be required to collect. That section now asks for the basic demographic information across all regions about the age, sex, and racial and ethnic background of the individuals on the waiting list. The last amendment would change section 1 (d)(8) to allow the Department to provide copies of the Department's policies, manuals and procedures in either written or electronic form. The amendment added the option of providing the data in electronic format. Representative Joule advised that the need for services for individuals with developmental disabilities will continue to grow faster than available resources. In order to meet the needs of individuals with developmental disabilities and their families, addressing the waitlist and available services must continue. The bill would require the collection and dissemination of data to relevant parties. Representative Joule pointed out that there is a zero fiscal note. In order to make the best use of available resources and to ensure fair administration of the waitlist, the bill will establish periodic reviews along with an annual report to the Legislature and Governor. The periodic reviews will ensure those individuals with developmental disabilities and their families that the waitlist is being fairly administered, reviewed, and updated on a regular basis. Additionally, the bill will require the Division to establish written procedures and consumer information which would be available to aid the general public. Representative Joule pointed out that at this time, this is a $50 million dollar industry without uniform statewide information available to the public who accesses and uses the service. Representative Phillips pointed out that the benefits of the program would fall in line with the missions and measures of that Division. DAVID MALTMAN, (TESTIFIED VIA TELECONFERENCE), DIRECTOR, GOVERNOR'S COUNCIL ON DISABILITIES AND SPECIAL EDUCATION, ANCHORAGE, testified in support of the legislation. He deferred testimony to Mr. Dummann, the Chair of the Council. ERNEST DUMMANN, (TESTIFIED VIA TELECONFERENCE), CHAIRMAN OF THE GOVERNOR'S COUNCIL ON DISABIITIES AND SPECIAL EDUCATION, ANCHORAGE, advised that he had been appointed to that Council by Governor Hickle in 1991, to speak for those people that can not speak for themselves. He stressed that the current system and State agencies which these people have had to work with for maintaining their homes, has "broken down" many families and consumers. Government has been inefficient and non-responding. He stated that the present system has failed. He emphasized that passage of the proposed legislation would provide family members answers that they deserve. He urged support for HB 346. KATHLEEN FITZGERALD (TESTIFIED VIA TELECONFERENCE), COALITION OF ALASKA, ANCHORAGE, noted that this would be an exciting piece of legislation for the State. She requested that the Committee pass the bill so as to enhance a system that has been without answers for many people statewide. She stressed the importance of this legislation. SHELLY SHOWALTER (TESTIFIED VIA TELECONFERENCE), FAIRBANKS, testified in support of the legislation. THERESA REGER, (TESTIFIED VIA TELECONFERENCE), KENAI, testified in support of the legislation. She commented how her child had disappeared off the waitlist during the past three years. He had been on the list for fourteen years. She urged support of the bill. Representative Phillips asked if some people were removed from the list because of their age. Ms. Reger replied that was not the case for her. SUSAN STAFFORD, (TESTIFIED VIA TELECONFERENCE), KENAI, spoke in support of the legislation. DENNIS HAAS, (TESTIFIED VIA TELECONFERENCE), KENAI, noted his frustration on being on the waitlist for over ten years for services for his daughter. He emphasized that the proposed bill would formalize the process, making it more consistent in determining the eligibility of State services. LYNETTE HAAS, (TESTIFIED VIA TELECONFERENCE), KENAI, explained that as she worked for a local nonprofit agency, Frontier Community Services, when she became more confused with the waitlist situation where doing family support work. She agreed that sometimes it was better just not knowing as a parent. She stressed how confusing the waitlist system has become and urged support of the legislation. HOLLY KRISTIANSEN, (TESTIFIED VIA TELECONFERENCE), KENAI, testified in support of passage of HB 366. She stressed how "sad" it is that Alaska's children sit and wait for placement during such critical times of their development. She emphasized that there needs to be procedures to address these concerns. There should be a current process for offering a quality of life for people and accountability to those people. Representative Phillips asked if there was an "aged out" period and if that was the reason why some people got dropped off the list. Ms. Kristiansen did not believe that was what was happening. She stated that in the case of her four-year-old son, because he was receiving services that were privately paid for, he was taken off the early intervention program. WINI CROSBY, (TESTIFIED VIA TELECONFERENCE), KENAI, noted that she worked with people with disabilities. She addressed that fact that these people are confused. She explained that the current system is crisis driven. People get steadily pushed down the list until they become chronic and then they move to the top of the list. She recommended that the Committee support anything that could make the list more "understandable" to the people with disabilities and their families. She urged support of the bill. RENE GAYHART, DIVISION OF MENTAL HEALTH AND DEVELOPMENTAL DISABILITIES, PROGRAM SPECIALIST, DEPARTMENT OF HEALTH AND SOCIAL SERVICES, JUNEAU, stated that the waitlist exists because insufficient resources are available to meet the service needs of all consumers eligible for developmental disabilities (DD) services. Historically, the Division has had few opportunities to report accurate information about the waitlist to the Governor and the Legislature, as well as to consumers and other stakeholders. For the first time since the inception of the waitlist in 1989, in the spring of 1999, the Division proactively took on the responsibility of a comprehensive assessment of that list. The results of the assessment proved to be of great value to consumers, families, and other stakeholders of the DD service delivery system. Ms. Gayhart added that the bill would provide an ongoing opportunity to submit regular and accurate information in a manner that may guide decision-making and program planning. The opportunity to have the information available in the public arena would eliminate inaccuracies and misunderstandings about the waitlist and the Division's policies and practices relating to the needs of its consumers. Co-Chair Therriault asked why a list had not been created in the past. Ms. Gayhart replied that there is nothing preventing the Division from doing a list. She noted that she had been working on a comprehensive program review this past year. She did not understand why it had not been done in the past, but noted that it is now current and up to date. There is a new system which will be available by July 2000. Co-Chair Therriault asked if the bill was needed. Ms. Gayhart commented that the bill would be a good thing to have in place for the long term through an administration change. Representative J. Davies stated that the intention of the bill is to guarantee that the report stays available so that future "break-downs" don't occur. Representative Foster MOVED to report CS HB 346 (HES) out of Committee with the individual recommendations and with the accompanying fiscal note. There being NO OBJECTION, it was so ordered. CS HB 346 (HES) was reported out of Committee with a "do pass" recommendation and with a zero fiscal note by the Department of Health and Social Services dated 3/6/00.