Legislature(2017 - 2018)CAPITOL 106
03/29/2018 03:00 PM HEALTH & SOCIAL SERVICES
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SB 174-PROGRAMS FOR PERSONS WITH DISABILITIES 3:26:18 PM CHAIR SPOHNHOLZ announced that the next order of business would be SENATE BILL NO. 174, "An Act relating to the duties of the Department of Health and Social Services; and relating to the administration of programs for persons with physical and mental disabilities." 3:26:44 PM SENATOR PETER MICCICHE, Alaska State Legislature, paraphrased from the Sponsor Statement [Included in members' packets], which read: When Alaskans with physical and mental disabilities are able to actively participate in the system of their care, a higher quality of life is achieved as well as a sense of independence. SB 174 will provide a clear pathway to achieve both of these things by allowing the Department of Health and Social Services to take a more flexible approach to administering programs. A positive, person-centered approach should be embedded within all decisions made at both systems design and service delivery levels. So why establish an avenue for participation? All persons deserve the right to be treated with respect and dignity. Higher quality of life is achieved by encouraging individuals with physical and mental disabilities to participate fully in the social and economic environment of their homes, communities, and the State. Improved stewardship of public monies requires stakeholder input from a broad cross-section of Alaskan urban and rural communities to ensure effectiveness of program redesign efforts. Five project teams comprised of over 70 people are already working to make this a reality by focusing on areas of person-directed culture change, workforce enhancement, community awareness, legislative engagement, and measuring success. SB 174 does not create the right to self-direct care or supersede laws related to eligibility programs. It will not have a financial impact on the State. SB 174 does provide a long overdue unifying vision to assure that the available resources, whether great or small, are allocated and applied in a manner that maximizes the contributions to community that Alaskans experiencing disabilities can make, and the flexibility of systems to utilize those resources with responsible stewardship now and in perpetuity. 3:28:34 PM SENATOR MICCICHE emphasized that Alaskans experiencing disabilities were not cattle, they were not a number, but that they were individual, amazing Alaskans who had hopes and dreams and wanted to accomplish the very most they could in their lives. He noted that when past services had been delegated without their participation, they had sometimes felt more like numbers than amazing individuals. He offered his belief that we would all want the same input. 3:29:47 PM KAITLEEN STANSBERRY, Intern, Senator Peter Micciche, Alaska State Legislature, paraphrased from the Sectional Analysis [Included in members' packets], which read: Section 1 AS 47.80.095. Legislative Findings Related to Person with Disabilities. Adds a new section titled Legislative Findings Related to Persons with Disabilities. It presents how Alaskans with physical and mental disabilities quality of life is enhanced when allowed to actively participate in their support services. Section 2 Adds new language allowing the Department of Health and Social Services to take a flexible approach in allowing active participation for those with physical and mental disabilities. 3:30:47 PM CHAIR SPOHNHOLZ opened invited testimony on SB 174. 3:31:09 PM MAGGIE WINSTON, Chair, Governor's Council on Disabilities and Special Education, shared her background as an individual who had experienced a disability at 21 years of age which took away functional use of her arms and her legs. She said that the services she received allowed her to live in her own home, to be a mom, to go to her job at a center for independent living, and to be an advocate for other individuals that experienced disabilities. She asked for support for the proposed bill as it would make individuals feel supported with this flexible shared vision for services and it solidified the spirit of self- determination, as things can often seem chaotic and out of control. She declared that this offered her support toward a meaningful life, something that we all wanted. 3:33:18 PM REPRESENTATIVE SULLIVAN-LEONARD asked how the proposed bill would assist her in the Medicaid process. MS. WINSTON offered her belief that the bill language solidified something more sustainable for service provision in the future, so that individuals looking for services in the future would have a language to empower and enable them to be self- determining. REPRESENTATIVE SULLIVAN-LEONARD mused that it would allow better communication with a health care professional or other support services for inclusion in the decision-making process. MS. WINSTON said that it would establish a foundation of self- directedness, so that she did not need to accept something that would not work for her. The proposed bill would declare support for her in her individuality and her needs. 3:35:21 PM REPRESENTATIVE ZULKOSKY asked whether the proposed bill would allow statutory support for individuals to opt out of services they might not need, and have self-directed conversations with the department for the services they desired. MS. WINSTON expressed her agreement. 3:36:20 PM MICHELLE GIRAULT, Board Member, Key Coalition, stated that the Key Coalition was very supportive of the proposed bill to put into statute a foundational language that was value driven and upheld and supported those primary stakeholders across Alaska. She declared that the proposed bill would enable departments to work together to provide more synchronous delivery systems. 3:38:29 PM LIZETTE STIEHR, Executive Director, Alaska Association on Developmental Disabilities, paraphrased from a letter, dated March 13, 2018, which read: [Included in members' packets] AADD, the Alaska Association on Developmental Disabilities, is the professional association representing the voice of forty-six organizations in Alaska that provide home and community-based services to individuals who experience intellectual and developmental disabilities. The Association has been an active and strong supporter of the development of the Shared Vision. The Vision brings a renewed energy and excitement to the work the provider community. The Shared Vision reminds each of us why we have dedicated our professional life to this field and where we want the focus of services to be, on the individual being supported. We are so appreciative of Senator Micciche's SB174 that embeds the Shared Vision in statue. In statue this Shared Vision will provide a consistent and strong platform for individuals to lead their own services, rather than a bureaucracy. It enriches their lives and the fabric of the community in which they participate. Services matching the Shared Vision will provide for a more independence life and greater personal confidence for individuals. This will help stretch limited funds farther with greater participation in the community involving unpaid natural supports. Having the Shared Vision in stature will assure that the underlying philosophy of dignity, respect and choice doesn't change with shifts in funding or political leaders. Thank you again for your time, attention and efforts on behalf of so many individuals in Alaska both providing and receiving services and supports. 3:41:03 PM CHAIR SPOHNHOLZ opened public testimony on SB 174. 3:41:26 PM COREY GILMORE, Governor's Council on Disabilities and Special Education, shared that he was a recipient of services. He explained that services were provided based on a document of care for what other people think they may need. These plans of care were decided in a large conference while "people talk about you." Right at the end of the meeting, these people would ask him what he would like to work on. He declared that it was necessary "to turn that on its head," make these plans of care about what the individual wants to do, and that the individual needed to be control of that. He pointed to the difficulties for his staff as they tried to follow the plan, even though he stated that he had not agreed to that goal. If he refused to work on a goal, he would receive less service. He emphasized that the plan of care should be the individual's plan, and that "we can all stand to work on" these goals. He pointed out that he hated to work on goals that were not his own. 3:45:36 PM REPRESENTATIVE TARR said that she did not know that by not working on the goals in the plan of care, an individual could lose those services. She asked if this was based on non- participation for those services. MR. GILMORE declared that he was all for participation, that life required audience participation. He stated that currently the goals were not participatory, they were meant to be habilitative, which was often difficult for individuals. He noted that, as he was 42 years old and had cerebral palsy, his philosophy was that if he could be habilitated, none of his staff would need to be here. He expressed support for goals that he could live with, pointing out that currently he did not have the ability to say "no, I didn't agree to that goal. We have to do it because it's in our plan of care. If we don't do it, we can lose services." He explained that habilitation was a means to justify the cost. 3:48:19 PM CHAIR SPOHNHOLZ closed public testimony on SB 174. 3:48:27 PM REPRESENTATIVE EASTMAN offered Conceptual Amendment 1, as follows: Delete "can achieve a meaningful life" Replace with "can be more active" REPRESENTATIVE EASTMAN said that would remove the question for the philosophical components for the meaning of life. 3:49:53 PM SENATOR MICCICHE offered an example for activity and opined that he was unsure that this activity would lead to a more active, or meaningful, life. He declared that this was not about activity, but was about self-determination for personal treatment, and the "most value out of life how you see fit." He declared that this was not about physical activity, but was about accomplishment, opportunity, and fulfillment. CHAIR SPOHNHOLZ expressed her agreement. REPRESENTATIVE EASTMAN moved to adopt Conceptual Amendment 1. CHAIR SPOHNHOLZ objected for discussion. She pointed out that the proposed bill had been drafted in collaboration with the Governor's Council on Disabilities and Special Education. 3:51:25 PM REPRESENTATIVE TARR directed attention to the top of page 2 of the proposed bill. She offered her belief that "having a meaningful life" was language often used per the reasons stated by Senator Micciche. She declared that recognition, no matter the physical or intellectual challenges or limitations, for the opportunity to have a full and meaningful life should be supported. 3:52:23 PM REPRESENTATIVE EASTMAN said that he supported the idea of more and increase and other words; however, the current wording indicated that, without this program, a person cannot achieve a meaningful life. He offered his belief that, as the proposed bill was not intended to give a meaningful life when the person did not otherwise have a meaningful life, philosophically, it was more than could be achieved through the program. He acknowledged that, although there were many good things that could "come of this program, but giving someone meaningful life, even if we were just talking about more meaningful life, I think that would be an entirely different concept." He said that the proposed bill was currently written in such a way that a person could not achieve a meaningful life without this program, and that he did not agree with that. 3:53:20 PM CHAIR SPOHNHOLZ maintained her objection. 3:53:31 PM A roll call vote was taken. Representative Eastman voted in favor of Conceptual Amendment 1. Representatives Spohnholz, Kito, Tarr, Sullivan-Leonard, and Zulkosky voted against it. Therefore, Conceptual Amendment 1 failed by a vote of 1 yea - 5 nays. 3:54:23 PM REPRESENTATIVE TARR expressed her pleasure that this proposed bill and another bill regarding supportive decision making were both moving forward, as they seemed long overdue. CHAIR SPOHNHOLZ declared that the concept of self-determination was one of the most important concepts that we have, as individuals, to allow control of our own bodies and our own destinies. She stated that most of us don't like to be told what to do, and that we should be able to make the choices for our own lives that best fit with our values. She added that we should be able to build our skills in ways that are meaningful to us, and not necessarily to other people. 3:55:48 PM REPRESENTATIVE ZULKOSKY moved to report SB 174, Version 30- LS1258\D, out of committee with individual recommendations and the accompanying zero fiscal notes. There being no objection, SB 174 was moved from the House Health and Social Services Standing Committee.