Legislature(1999 - 2000)
03/02/2000 03:07 PM House HES
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* first hearing in first committee of referral
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+ teleconferenced
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HB 346 - SERVICES FOR DISABLED PERSONS Number 0065 CHAIRMAN DYSON announced the first order of business as House Bill No. 346, "An Act relating to services for persons with developmental disabilities." Number 0079 REPRESENTATIVE REGGIE JOULE, Alaska State Legislature, sponsor, came forward to present HB 346. He mentioned there is a proposed committee substitute (CS) in the packets. The title was changed to make it more accurately represent the purpose of the bill. The second change deleted some language in Section 1(d)(3). Number 0219 REPRESENTATIVE COGHILL made a motion to adopt the proposed CS for HB 346, version 1-LS1347\H, Lauterbach, 3/1/99, as a work draft. There being no objection, that proposed CS was before the committee. REPRESENTATIVE JOULE stated that HB 346 will provide a tool to better internally manage the wait-list process, provide more effective use of the wait list, and provide better information to the public and to individuals with developmental disabilities. More specifically, the bill establishes periodic reviews of the wait list, along with an annual report to the legislature and governor. The information provided in the annual report will be useful to individuals with developmental disabilities and their families, the administration, the legislature and a variety of service agencies. The information can also be used by the division for a variety of purposes, including evaluating the existing system, evaluating the number of people and the length of wait for services, and the type and effectiveness of available services. Additionally, the bill requires the Division of Mental Health & Development Disabilities (DMHDD) to establish written procedures and consumer information that will be available to the general public. REPRESENTATIVE JOULE explained that this new information will greatly aid the general public. It will help individuals with developmental disabilities to understand the process and their rights. As of December 1, 1999, there were 786 people on the developmental disabilities wait list and 333 on the infant learning program wait list; approximately 2,100 individuals are being served. It has been a difficult process for those who have had to wait for services, and this will help. REPRESENTATIVE COGHILL referred to page 2, lines 18-19, paragraph (6). He asked if the 90-day period starts when people get service or when they are identified. Number 0556 CHRISTINE HESS, Staff to Representative Reggie Joule, answered it would be from the time that people came on the waiting list. However, the first 90 days of reporting would be 90 days after the bill became effective. Number 0571 REPRESENTATIVE COGHILL referred to page 2, lines 11-12, and said he believes that the word "feel" is subjective in reporting. MS. HESS said that language probably got into the bill because when looking at people's developmental disabilities, the department asks for the input of the family and the person with the developmental disability. REPRESENTATIVE COGHILL suggested a friendly amendment, dropping the words "they feel" on page 2, line 12. REPRESENTATIVE JOULE said he didn't object to that. Number 0672 REPRESENTATIVE COGHILL made a motion to adopt Amendment 1: page 2, line 12, strike "they feel are" and add "that may be". CHAIRMAN DYSON asked if there was any objection. REPRESENTATIVE BRICE objected. He asked for it to be a pending amendment. He said he believes that the way services are developed involves a tremendous amount of input from the family, and "they feel are" might show more empowerment toward the family. It is a technical thing, but he would like to hear from the department. CHAIRMAN DYSON suggested "they want". REPRESENTATIVE COGHILL noted that it was already in there, at the beginning of the sentence. REPRESENTATIVE BRICE withdrew his objection. Number 0761 CHAIRMAN DYSON announced that Amendment 1 was adopted. CHAIRMAN DYSON referred to page 2, line 23. He asked if it would be steering around a problem to say "finishing" instead of "graduating." BETH LAPE, Special Assistant, Office of the Commissioner, Department of Education & Early Development, stated that currently in statute students either receive a diploma or a certificate of attendance after 2002. CHAIRMAN DYSON asked Ms. Lape if she sees leaving "graduating" in the bill as limiting, or is it okay. MS. LAPE said she believes it will be limiting. Number 0877 REPRESENTATIVE JOULE responded that while to some it may seem limiting, some students with developmental disabilities will graduate. On the other hand, if during the process another way comes up so that all students with developmental disabilities are getting not just a certificate of attendance but will be graduating - maybe in a specified area, for example - that high school diploma will mean something to them. He would like to see the language remain as-is because it holds out that level of achievement for those individuals. MS. LAPE said if the EED decides to move away from the diploma, there will need to be a statutory change. This concern could be handled at the same time. REPRESENTATIVE BRICE commented that this is an annual report being talked about, not changing the high school graduation requirements or anything else. The DHSS is just trying to find out a specific number of students who might have an IEP [individual education plan] and how they're doing on the test. Nothing is being changed with the exit exam. It would show some good data, keeping it the way it is. Number 1054 MS. HESS stated that the purpose in drafting that section was to get some hard-core data, to see if 70 percent of the special education students are dropping out. If that is the case, then the services need to be looked at to find out what's going on. The purpose is to find out what is happening to the students with developmental disabilities as they work through the system or if they drop out, and to tie a lot of data from different departments together to look at the success of the services being provided. CHAIRMAN DYSON referred to page 2, lines 25-26, about the legislators receiving copies of the written policies, manuals and procedures used by the department. He said he doesn't want to receive all of that. If people want the information, they can easily get it. REPRESENTATIVE JOULE said he preferred that it stayed in there. NUMBER 1144 REPRESENTATIVE BRICE suggested a middle ground where this information could be available electronically. CHAIRMAN DYSON said that is an excellent suggestion. He suggested changing page 2, line 25, to say those items may be available either written or electronically. Number 1227 CHAIRMAN DYSON offered a conceptual amendment, page 2, line 25, which adds the phrase "and make available in written and electronic form" before the words "policies, manuals and procedures". There was no objection; therefore, Amendment 2 was adopted. Number 1270 CONNIE ANDERSON, Developmental Disabilities Program Administrator, Division of Mental Health & Developmental Disabilities (DMHDD), Department of Health & Social Services, came forward to express support for HB 346. The bill will require the DMHDD to review the wait list for persons with developmental disabilities (DDs) and report the results of this review annually to the governor and the legislature. MS. ANDERSON explained that the wait list exists because there are insufficient resources to meet the service needs of all consumers eligible for DD services. Historically, there has been little opportunity to report accurate information about the wait list to the governor and the legislature, as well as to the consumers, families and other stakeholders. In spring 1999 - for the first time since the inception of the wait list in 1989 - the division proactively took on the responsibility of a comprehensive assessment of the wait list. The results of the assessment proved to be of great value to consumers, families and other stakeholders of the DD service delivery system. This bill gives the division an ongoing opportunity to submit regular and accurate information to guide decision making and program planning. The opportunity to have this information available in the public arena will also eliminate inaccuracies and misunderstandings about the wait list and the division's policies and practices relating to the needs of its consumers. CHAIRMAN DYSON asked Ms. Anderson if she had any problems with any of the amendments made today. MS. ANDERSON answered no. Number 1399 CHAIRMAN DYSON referred to page 2, line 11-13, and asked if the information is used by the department for some sort of ranking or prioritizing for the prospective recipients of the service. MS. ANDERSON affirmed that. CHAIRMAN DYSON asked Ms. Anderson what criteria are used for advancing people on the list. MS. ANDERSON said when she took the position almost a year and a half ago, people had been waiting since 1985 for services; that was not acceptable to her. The department looks at how long the person has been waiting and what the level of need is, from the most critical to the least critical level. CHAIRMAN DYSON said he was surprised there was no fiscal note with this bill. It seems to him that a significant amount of work is demanded and wondered how the division would do that for nothing. MS. ANDERSON answered that the information about the wait list is very current, clean and up to date. That was not the case a year ago. A significant amount of time has already been invested to provide the most accurate information available. As part of working in partnership with the stakeholders, the division has developed ways to share information, and this is one of them. It was something planned on anyway with the existing resources. CHAIRMAN DYSON asked if the bill is necessary, then. MS. ANDERSON replied that she believes the bill is necessary because it provides a regular opportunity to share information. CHAIRMAN DYSON said he wouldn't know what would keep the division from sending this information to the legislature and the governor now. MS. ANDERSON answered that it is always nice to have the invitation. Number 1629 MS. LAPE added that the EED is capable of providing the information requested by the DHSS. Number 1663 LYNN HETTICK testified via teleconference from Seward. The mother of three disabled children, she shared her experiences in dealing with the DMHDD and expressed support for HB 346. She said parents have no idea what the wait list is for. Two of her children were on the wait list for 1.5 to 2.5 years. Parents need to know what the process is because right now there is no process. Parents don't hear about the wait list until they receive a letter from the state saying they are eligible. Parents still don't know what they are eligible for, because no one has told them what services are available. CHAIRMAN DYSON encouraged her to establish some relationship with her legislator. The legislator can often help get information for a constituent in situations like this. Number 1757 ERNEST DUMMANN testified via teleconference from Anchorage. He is the parent of a child with a severe developmental disability. He asked the committee to support HB 346. His child will require lifelong services. He shared some of the experiences his family had with his son. They began to seek services in 1988, only to find out there was a wait list for services. There was no way to know when services would be available. There was no formal information on who would be selected for services or what services may be available. Nor was there a written policy manual from the state nor a formal appeal process to get any of this information. MR. DUMMANN stated that his family anguished for the next five years, not so much from not having services but from not knowing or being able to plan for their son and his future. Not having information in a desperate situation is a torture. They did receive services in 1994. With help, the family has returned somewhat to normal. Right now, over 800 Alaskan families are in the same position and are suffering, with little or no information. He asked for the committee's support of HB 346 to give families and the citizens of Alaska the knowledge to plan for their futures. Number 1877 SCOTT CALDER testified via teleconference from Fairbanks. He expressed his support for HB 346. He commented that providing information to parents on many programs is important because the uncertainty is worse than torture. Number 2003 MARLA ADAMS came forward to express support for HB 346. She agreed it would be helpful to have the information. Number 2039 KATHLEEN FITZGERALD, President, Key Coalition, came forward to testify. She stated that the families and stakeholders had advocated for a long time to have written policies and procedures to follow the process. It is much easier to wait if one knows what the process is and what he/she is waiting for. She urged the committee to pass this bill. REPRESENTATIVE COGHILL asked Ms. Fitzgerald if there is a structural understanding of who goes where in the department and how the Key Coalition connects with the department. MS. FITZGERALD said she believes so. The Key Coalition works with the Governor's Council on Disabilities & Special Education, the stakeholder organization and the division to try to plan. There is some collaboration, but there hasn't been a written policy. Once everyone involved comes up with how the system should work, it needs to be written down. REPRESENTATIVE COGHILL said that as a freshman legislator, it was difficult to get that type of information. He suggested that Key Coalition may want to help line it out a little better. MS. FITZGERALD said the Key Coalition was looking at a desk manual similar to what the elder Alaskans use for providers and individuals. It lays out for everybody the way things should work and the policies and procedures and hearing rights are in there together. There needs to be something like that on the developmental disabilities side. She hopes that this generates that. Number 2200 CHAIRMAN DYSON commented that Ms. Fitzgerald made a good point that getting this in law should help get past the "changing of the guard" and administrations who have different emphases. Number 2257 REPRESENTATIVE BRICE made a motion to move CSHB 346, version 1- LS1347\H, Lauterbach, 3/1/00, as amended, out of committee with individual recommendations and attached fiscal notes. There being no objection, CSHB 346(HES) moved from the House Health, Education and Social Services Standing Committee.
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