Legislature(1999 - 2000)
03/04/1999 03:02 PM House HES
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* first hearing in first committee of referral
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+ teleconferenced
= bill was previously heard/scheduled
HB 72 - PERSONS WITH DISABILITIES Number 1185 CO-CHAIRMAN COGHILL announced the next order of business as Sponsor Substitute for House Bill No. 72, "An Act relating to the provision of services for persons with handicaps; substituting, in the chapter relating to the rights of persons with handicaps and programs for the benefit of persons with handicaps, references to 'disabilities' for references to 'handicaps'; correcting references in that chapter in certain definitions; and correcting in that chapter a reference to an act under which federal financial support is provided for the support of education of the handicapped." Co- Chairman Coghill called on Representative Brice to present the bill. Number 1200 REPRESENTATIVE BRICE said the State of Alaska, following federal trends, eliminated institutional care for disabled citizens. Harborview Development Center in Valdez has been closed and people have moved back in the communities. The problem has been that the community services have been inadequately funded. Currently there are about 700 people on the waitlist. HB 72 implements a concrete time line by which people with disabilities will receive services; it removes the funding barriers so the Department of Health and Social Services (DHSS) can administer the community-based care program at an appropriate financial level; and revises the sections in the statutes that say "handicap" to say "disability". Currently the people on the waitlist in crisis get service, but people who have a fairly stable living situation may wait six months to six years before they are eligible for services. CO-CHAIRMAN DYSON asked for an explanation of "it removes the barriers for funding." REPRESENTATIVE BRICE answered that the statute currently says the DHSS will provide the programs the legislature funds. The DHSS has never asked for full funding, therefore the legislature never fully funded the program so there has always been a waitlist. This bill says the DHSS will provide those services so at least the DHSS will be required to ask the legislature for adequate funding. CO-CHAIRMAN DYSON asked what would happen if the legislative appropriation in a given year is not sufficient to get the level of care to qualified people within time guidelines in this bill. REPRESENTATIVE BRICE answered there would be no provision of service. CO-CHAIRMAN DYSON said he thought a case could be made that this would mandate that the time people wait for service be followed and the legislature could be under court order to take the funds from other sources to put the amount of resources necessary to meet the time guidelines in this bill. REPRESENTATIVE BRICE said that is probably an accurate statement although he believes that it would work much the same way as Medicaid/Medicare. There have been many court cases where people with disabilities have sued for service and regardless of what the state statute said, the courts have awarded in their favor because of the length of time people are being left without services. The concern is that there is no plan to eliminate the waitlist, and HB 72 at least gets an enumeration of who is on the waitlist. Number 1518 CO-CHAIRMAN DYSON said he would be wholeheartedly in favor of HB 72 if it mandated that DHSS put forth in the budget request the resources required. The fact that the language that says that the services are subject to the appropriation have been deleted makes him uneasy. REPRESENTATIVE KEMPLEN said there is still discretionary authority given to the DHSS. The use of "may" is an important distinction on lines 5 and 7. If the mandatory language were there then he could understand the reservations. This legislation simplifies the statutes and still allows the discretionary ability of the DHSS; it doesn't mandate anything. CO-CHAIRMAN DYSON said with the permissive "may" there, the DHSS can provide services directly or through contractors, but he doesn't read it that there is the option of not providing services. REPRESENTATIVE BRICE said the idea is that the DHSS may provide the services themselves or contract them out. HB 72 starts addressing the needs of the people on the waitlist to focus on what is needed. SUSAN DRATHMAN, Coordinator, The Pride Program, Community Mental Health Center testified via teleconference from Homer and said she supports the elimination of the waitlist. In Homer there are about 12 people who have no services at all, several have been on the waitlist four or five years, some placements will expire in May and they can't make any plans. The waitlist is detrimental and some people who do receive services are under funded. Number 1989 DAVID MALTMAN, Executive Director, Governor's Council on Disabilities and Special Education testified in support of HB 72. The Governor's Council's role in this is to plan, evaluate and then promote services that benefit people with developmental disabilities. He provided an article from the National Conference of State Legislatures for the packets. The article gives an idea of what legislative peers are experiencing in other states. MR. MALTMAN reported that on July 1, 1998 there were 787 people waiting for services. Through serving about 250 people, 180 moved away or didn't need services any longer, the list today is 690. The point is some people have been served throughout the year and the waitlist has been reduced. Factors that cause the waitlist to grow include demographics, about 2 out of 100 people are developmentally disabled; students who finish special education programs may need minimal vocational support or meaningful day activities; and elderly parents who may need some services for their adult children. MR. MALTMAN asked for support for HB 72 for three reasons: it emphasizes the on-going need to develop a long-term approach to serving people with developmental disabilities; it provide a mechanism for the state to move eligible people into services; and it replaces archaic and out-dated offensive language. Number 2251 EMILY ENNIS, Executive Director, Fairbanks Resource Agency, Member, Key Coalition came forward to testify in support of HB 72. She informed the committee of the needs of developmentally disabled people so they could better understand those needs. In order for those people to maintain a life as normal as possible, they require community services. About 11,000 of people in Alaska are developmentally disabled and about 2,200 of those are receiving services. Around 700 are waiting for services and while they wait their families could go into crisis. The waitlist significantly impacts lives of Alaskans with disabilities and their families. TAPE 99-15, Side B Number 2372 MS. ENNIS said that the waitlist has grown because the scope of eligibility was broadened, but the money was not there to pay for the growth. As a reminder, she said the state funded Harborview Development Center about 30 years for $7 million a year of which $3.5 million came from general funds. Those people are now being served in the communities and the needs are the same. There needs to be a long-term future plan that may include a bigger price tag than has been addressed, and it needs to be faced. She wholeheartedly supports HB 72 as do the members of the Key Coalition she represents. Number 2241 ELAINE HAMRICK came forward to testify as a mother of a child with multiple disabilities, as a member of the Key Coalition and for families on the waitlist. Although there will always be those who abuse the system, in her experience the families needing services ask for very little; not even what they need. After her daughter was born, she started working in the developmental disability field to help other families. She has first-hand experience putting together support for families in crisis and is surprised at how little they ask for. As a member of Key Coalition, she is concerned with the high fiscal note. She would like an accounting of the fiscal note, a copy of the waitlist to compare it with local service providers and to give feedback. REPRESENTATIVE BRICE agreed that the fiscal note raises some substantial questions, but he can work with the DHSS on it. He would like to see a copy of the waitlist without the confidential information and the requested services of those individuals. MS. HAMRICK repeated her wholehearted support of this bill. Number 1938 SCOT WHEAT affiliated with National Alliance for the Mentally Ill (NAMI) and public member on Alaska Psychiatric Institute (API) Board, testified via teleconference from Homer. The parallels between the phase out of Harborview and downsizing of API is important to him. He wants to see community implementation of services that keep people out of institutions and in the least restrictive environment. He believes it is relatively inexpensive to provide services in the community. The waitlist is tragic and unacceptable and he would like to see it eliminated or at least reduced. He believes that the language that talks about reducing the time on a waitlist year by year is a real important provision. Number 1850 BRIAN BENNETT testified via teleconference from Homer as a father of a developmentally disabled son. Although his son's condition is considered undiagnosed, several specialists believe he was injured by an immunization shot during the first year of his life. He offered his story as a reminder that having a developmentally disabled child could happen to anyone from an illness or injury. MR. BENNETT said his family is doing OK with the respite care and funding for specialized equipment they have received. He believes that an increase in funding for the developmentally disabled will actually save money for the State of Alaska in the long term. He thinks if families receive support, they are more likely to remain a family and people considering foster care may be more likely to accept difficult responsibilities with necessary support. Comparing the $3,000 to $6,000 per year of support needed by these families to the $80,000 to $120,000 per year for institutional care, it makes sense to fully fund support services for the developmentally disabled. He served on the Site Review of the Community Mental Health Center and The Pride Program in Homer, and was amazed at the tremendous positive impact that the services for the developmentally disabled have on the clients and their families. He added that there are many other families out there at or near crisis who need support services. DIANA RAY came forward to testify from Hope Community Resources, a provider of developmentally disabled services in the state. She emphasized that the services are not a luxury but are literally for the survival of the family. The divorce rate for families with children with disabilities ranges from 72 percent to four out of five because of the stresses. When families receive services, some of the stresses are relieved. Another consideration is there are over 1,000 individuals employed through DD [developmentally disabled] funds throughout the state and this is an investment for the entire State of Alaska. MS. RAY expressed concerns about the fiscal note. She explained the waiver system which the federal government developed. The federal government years ago fully supported putting people into institutions. They regulated it, and the cost became enormous, which is one of the reasons Alaska closed Harborview. If a person qualified for a level of care as they would receive in an institution, they wouldn't have to go to the institution, but the federal government would participate in the funding of the services in the community. The state receives a 59.8 percent match from the federal government for people on waivers, which eases the State's burden. MS. RAY said she agreed with the numbers in the fiscal note for the Division of Medical Assistance. One assumption made is only 60 percent of individuals who are developmentally disabled would qualify for a waiver, but in her experience that the number is around 75 to 80 percent. She believes that there are some faulty assumptions with the general fund piece of the fiscal note. It assumes that all 1,000 people that DHSS is proposing to serve need a full set of services. Many people on the waitlist only need respite care that would cost around $3,000; some only need gainful employment or a meaningful day activity, which would be less than the $37,000 proposed by DHSS. MS. RAY agreed that families will ask for only what they need. She noted that not everyone on the waitlist needs services now but in a few years. She is concerned about the implementation date and the date for serving 1,000 within six months. She made a point to refer to "people" not a "program." In reference to the language about the DHSS providing services, she thought it left the door open for the DHSS to open an institution. She thinks that the private sector can provide the services much more economically with oversight from the division. She urged the committee to look at that language. Number 1280 KARL BRIMNER, Director, Division of Mental Health and Developmental Disabilities, Department of Health and Social Services, informed the committee that the Division has been involved in an assessment of the waitlist. He said the assessment piece has been completed but the data hasn't been analyzed yet. They don't have all the information available today, but he will get it to the committee members as soon as it is available. He confirmed the statistics of earlier testimony. It is his hope that the Division will be able to provide services to the 140 without services in this fiscal year. REPRESENTATIVE GREEN expressed his concern with the fiscal note and said there is either an insurmountable problem ahead or there is a problem with the math. MR. BRIMNER said when the Division of Medical Assistance (DMA) estimated the per service cost, they reflected about $37,000 for a person on a waiver; roughly 60 percent of that would be covered by the federal government. Based on recent information, there are increased costs per waivers at this point. The actual figures per cost on waivers reflect a higher amount so this shows a conservative amount of cost per service for anyone on a waiver. When the DMA estimated the cost per service, they estimated them at a full range of services even though some people don't require a full range of services. It is very difficult to predict how many services someone will need in the future. The fact that providers have not realized the cost differentials they have experienced over the years, they are losing key staff and that is a real cost factor. The figures can be reworked and he will be happy to work with Representative Brice on that. Number 717 CO-CHAIRMAN DYSON referred to page 3, line 4 of HB 72 and asked what Mr. Brimner thought the deletion of the words in brackets would mean. MR. BRIMNER says he thinks it creates a possibility of an entitlement for services. CO-CHAIRMAN DYSON asked if the DHSS is publicizing the waitlist and the services being provided. MR. BRIMNER said they will be able to report a complete array of information once the analysis is completed. They want to share the information with the public, providers and consumers. CO-CHAIRMAN DYSON asked how and when will that information be made available. Number 0391 CONNIE ANDERSON, Program Administrator, Developmental Disabilities Program, Division of Mental Health and Developmental Disabilities, Department of Health and Social Services said she hopes to have the data in a draft format by the end of the month. CO-CHAIRMAN DYSON suggested that this information be available on the Governor's web site on a monthly basis. He asked that they think about that and give feedback about that suggestion. REPRESENTATIVE BRICE said the DHSS did an accounting and enumeration of the waitlist about a year ago and presented it to the budget subcommittee. The real fiscal note is who is on the waitlist, how long they have been on it and what services they need. Number 0150 REPRESENTATIVE WHITAKER said it is important that they have information they can trust so they can make a reasonable decision, and he requests on future fiscal notes that they reflect reality. REPRESENTATIVE GREEN asked for feedback before they revisit this bill. Number 0052 REPRESENTATIVE BRICE would like a follow up hearing to review that information and have further discussion. CO-CHAIRMAN DYSON suggested that he and Co-Chairman Coghill ask the Department of Law to review the deletion on page 3, line 4 and 5 to see if that does expose them to an entitlement to full funding. [HB 72 was held over]
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