Legislature(2017 - 2018)BARNES 124
03/13/2018 08:00 AM COMMUNITY & REGIONAL AFFAIRS
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SB 174-PROGRAMS FOR PERSONS WITH DISABILITIES [Contains discussion of HB 336.] 8:04:08 AM CO-CHAIR PARISH announced that the only 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." 8:04:42 AM SENATOR PETER MICCICHE, Alaska State Legislature, as prime sponsor, introduced SB 174. He noted that during testimony on SB 174 before the Senate Health and Social Services Standing Committee, someone he referred to as "Clair's mom" had testified that anyone with children is "one catastrophe away from needing services." He explained that a life-changing experience can come on quite suddenly and result in the need for services from the Department of Health and Social Services (DHSS). Senator Micciche said SB 174 would allow DHSS to partner more closely with persons with physical or mental disabilities "to enable active participation in their support service." He said this is a shared vision of over 200 people and organizations, including the Governor's Council on Disabilities and Special Education and the Key Coalition of Alaska. Giving persons with disabilities more control over their support services enhances their lives and enables their full participation in the social and economic aspects of their communities. Further, the state benefits from the cost reduction that results from providing services for the specific needs of individuals instead of providing "standard service bundles." Senator Micciche said SB 174 would enable support services programs to consider the paid and unpaid support of individuals and would provide "a long-overdue unifying vision to allocate and apply resources" in a manner that maximizes the experience of community involvement for Alaskans with disabilities. Senator Micciche asked committee members to remember that individuals with disabilities are not "cattle"; "they are not a number"; but are "amazing individual Alaskans with the same hopes, dreams, and plans as the rest of us." He said SB 174 recognizes that, and he urged the committee to support the proposed legislation. 8:07:34 AM KAITLYN STANSBERRY, Intern, Senator Peter Micciche, Alaska State Legislature, presented SB 174 on behalf of Senator Micciche, prime sponsor. She said the proposed legislation is the product of input from over 200 individuals in organizations including the two listed by Senator Micciche, as well as the Alaska Mental Health Trust and other members of the community. Ms. Stansberry stated that all persons deserve to be treated with respect and dignity. The quality of life and treatment is enhanced for those persons with disabilities who are able to participate in the programs [that benefit them] because those programs can encourage those Alaskans to fully engage in their lives and fully participate in the economic and social environment of their homes, communities, and state. She said SB 174 would allow persons with disabilities to more actively participate in their systems of care, which they use daily. The proposed legislation would ensure that the available resources are allocated and applied "in such a manner to maximize the contributions of Alaskans experiencing disabilities within their community." 8:09:32 AM REPRESENTATIVE SADDLER noted that he was co-sponsor of [HB 336], the House companion bill. He asked what the best term would be to describe those who are "the subject of a supported decision- making agreement." For example, he asked if they would be the principle, the person, the individual, or the client. SENATOR MICCICHE suggested using "the client." REPRESENTATIVE SADDLER asked about the legal status of the agreements. SENATOR MICCICHE answered there would not be a formal system. The proposed legislation would not authorize the department to apply for a waiver to provide medical assistance, payments, or self-directed personal assistance. He emphasized there should be equal treatment as with any other client. He said clients have traditionally been "handed a treatment package, which may or may not fit their particular lifestyle." He offered an example of Maggie Winston, who is raising twins, has a job, is productive, and advocates statewide for persons with mental and physical disabilities. He said Ms. Winston does not have physical use of anything below her chest. He reiterated that SB 174 would not require a formal agreement but requests that DHSS allow autonomy when deciding on services that clients will receive. REPRESENTATIVE SADDLER asked what the current number is, in terms of people with disabilities in Alaska. SENATOR MICCICHE answered he does not have that number. 8:13:18 AM REPRESENTATIVE DRUMMOND questioned the use of the word "and" between "mental and physical disabilities". She asked if that meant a person had both, because not everyone has both. She further inquired as to the meaning of "IDB." SENATOR MICCICHE answered that SB 174 would affect persons with physical disabilities and persons with mental disabilities. He added, "It's not one in the same; it affects both of them." He explained that IDB stands for individuals with developmental disabilities. He noted that a term used in the past was "disabled Alaskans"; however, now the term used is "Alaskans with disabilities," which he opined is an important differentiation because the person comes first. He added, "We are all people; some of us have disabilities." 8:15:48 AM REPRESENTATIVE SADDLER opined that providing services in cooperation with clients instead of to or for them is a good thing. He asked how this distinction would "play out." SENATOR MICCICHE deferred to others who may have a better stance from which to offer an explanation. 8:17:51 AM LIZETTE STIEHR, Executive Director, Alaska Association on Developmental Disabilities (AADD), explained that AADD is the voice of the providers of services to the clients. The association currently has 49 dues-paying members and is a direct provider of services and care coordinators, who also provide direct services. She said AADD supports the "shared vision" represented under SB 174, which would provide for "flexible service array" and "services that are directed and driven by the person receiving the services rather than a bureaucracy." She expressed gratitude for the support of Senator Micciche and Representative Saddler for this legislation, because it would provide "a consistent and strong platform for individuals to lead their own services." She echoed the remarks of the bill sponsor and Ms. Stansberry about the lives that would be enriched under SB 174. In addition to providing confidence to clients, the plan would stretch limited funds further. Having the shared vision in statute, she said, would ensure the underlying philosophy does not change when there are shifts in funding or political focus. MS. STIEHR, in response to the previous question from Representative Saddler, offered the following numbers of those who would be directly impacted by [SB 174]: 222 children with complex conditions; 2,085 people who receive the intellectual with developmental disabilities waiver; and 88 with physical disabilities, but who may not also have a mental disability. 8:22:04 AM MS. STIEHR, in response to a question from Representative Drummond, explained that unpaid natural support refers to a "natural" friend of an individual with intellectual and developmental disability, who, for example, drives the person to a church they both attend. 8:23:50 AM REPRESENTATIVE SADDLER offered his understanding that Ms. Stiehr had mentioned 2,085 people get the waiver. He remarked that certainly there are more people on the waiting list for the waiver. MS. STIEHR affirmed there currently are 700 on the waiting list. 8:24:26 AM REPRESENTATIVE DRUMMOND asked for clarification about the waiver. MS. STIEHR answered, "A waiver is a Medicaid service that is expanded beyond the medical limited to doctor and hospital appointments; a waiver is services that allow for support within the community through Medicaid reimbursement. She offered examples, including family support, respite, residential services, group home living, and independent living. MS. STIEHR, in response to Representative Saddler, said she believes that in the long term, as people are given the ability to increasingly direct their own services, natural supports will be enhanced, which will reduce the need for paid support, thus saving the state money. REPRESENTATIVE SADDLER said people with disabilities are often entitled to a high level of care at great cost; the waivers allow people who deserve a high level of care to receive home- based support, which keeps them out of institutions and saves the state money. He said, "Waivers are savers for Alaska." 8:27:36 AM JIMAEL JOHNSON, Program Officer, Alaska Mental Health Trust Authority (AMHTA), stated that AMHTA advocates for trust beneficiaries, including those with mental illness, addiction, Alzheimer's, dementia, traumatic injury, and intellectual and developmental disabilities. She said AMHTA advocates for crucial services to the state's most vulnerable population through community-based services. When those services are "person-centered and directed," they effectively reduce the need for costlier institutional care. She said the goal of AMHTA is to serve as a catalyst for change and improvement in Alaska's health care. The trust continues to support the work of developmental disabilities collaboratives, which designed the vision on which SB 174 is based. Ms. Johnson said AMHTA recognizes SB 174 as framework to support people with disabilities in a way that increases quality of life for those individuals, their families, and their communities. The proposed legislation would do this by helping the individual with a disability to more actively determine his/her level of community-based care. She thanked the sponsor and committee for supporting SB 174. 8:30:00 AM REPRESENTATIVE SADDLER asked again for the numbers of people statewide with mental or physical developmental disabilities. MS. JOHNSON said she does not have an answer now, but could get one. 8:30:46 AM MICHAEL BAILEY, Chief Financial Officer, Hope Community Resources Inc., stated that Hope Community Resources Inc. provides many of the services previously mentioned. He said many systems of service delivery are often "siloed and traditionalized." Under SB 174, a system of paid and unpaid support would be utilized to enhance the abilities of Alaskans rather than solely address their disabilities. He said, "This bill promotes flexibility and greater inclusion, which then results in ... better stewardship with state funds and greater opportunity for individuals to experience stability." He offered the example of his daughter, who participated in "The Battle of the Books" in middle school, as part of a team, on which was a girl with a disability. He said the girl's friend supported her and the team took the state title. Mr. Bailey talked about inspiration resulting from the girl on the team with a developmental disability and moving away from traditional medical models. He mentioned directives from the federal government to actively maintain Medicaid funds. Mr. Bailey said SB 174 is not "an open checkbook" but promotes partnerships and new models of support via a value-driven philosophy. He said Hope Community Resources Inc. asks for the support of the legislature. He said people say, "It takes a village to raise a child." He submitted, "It takes a community to help Alaskans with disability live meaningful lives." 8:33:58 AM MICHELE GIRAULT imparted that she is the guardian of two adults with disabilities, as well as a board member of the Key Coalition of Alaska. She concurred with the comments that had been made thus far in previous testimony. She said as a guardian of one individual who receives a Medicaid waiver and one who is on a waiting list, she wholeheartedly supports putting into statute a vision of state support for all people regardless of disability. She said SB 174 sets a value-driven structure for how Alaska treats people and designs service. Ms. Girault said a service system can be challenging for people with disabilities; it is highly regulated and can be exhausting, especially when mental illness is added to the mix. She said a service delivery system based on flexibility results in community-based services that cost far less than institutional care. She talked about collaboration and determining how decisions impact the provider and receiver of the service. She said the Key Coalition of Alaska had this issue as its first platform and appreciates the sponsorship of Senator Micciche and the time the House Community and Regional Affairs Standing Committee is taking to consider the issue. She urged the committee to support SB 174. 8:37:02 AM REPRESENTATIVE SADDLER requested that "aspirational language" be translated into "some hard, practical applications." MS. GIRAULT said it is difficult to answer specifically because people are just starting to think about how it could work. Notwithstanding that, she said the woman she supports, who is on the waiting list, has some grant services that will end as of June 30, , for fiscal reasons and because of [budget] cuts that have been made to help stabilize other services. She said a flexible service would allow consideration of varied services, such as a companionship service that would allow her to access community safely. She said perhaps there is a way to deliver services outside of the Medicaid waiver specifically or perhaps a waiver could be added within the Medicaid waiver. She mentioned mental illness that older people with disabilities sometimes experience, and she indicated one consideration is how those people can access [mental health] services easily within their environment. She explained that some regulations restrict how those services are delivered. She said the idea is to set the vision that would allow departments to come together and share the funding sources to benefit individuals - to reduce the complexity of services and "ease the path for people who are asking for help." REPRESENTATIVE SADDLER mentioned [daytime rehabilitation] ("dayhab") and asked if there was a change under IDB waivers that would result in money saving. MS. GIRAULT answered that dayhab has been a service that has been somewhat individualized. She said she thinks guardians partnering with providers are looking for ways to create bigger group service for activities rather than individual activities. She said that is more natural for people who go bowling or to church with other people; however, people with disabilities need assistance to be safe, to access transportations, and to communicate their needs. 8:42:45 AM MAGGIE WINSTON, Chair, Governor's Council on Disabilities and Special Education, referred to Senator Micciche's opening quote about people being just one step away from a calamity that necessitates a need for services. She said that is her story. She was struck with a virus at age 21 that left her with spinal chord injury and no use of her arms and legs. She said this threw her into an entirely new life, in which she had to find services that would enable her to live in her home and community as a young person and mother. She said she receives a package of services, but sometimes the size of the package is not appropriate. She advised that SB 174 would allow individuals to receive services that are more fitting to them. 8:45:44 AM MS. WINSTON, in response to Representative Saddler, named types of services that individuals can receive, including supported employment, supported living, and group home living. All of them provide different reimbursement rates and regulations and different agencies that cover them. A broad scope of services can be complicated in terms of receiving in-home care, for example. In response to a request for clarification, she said [SB 174] would make it easier for individuals to receive services by making it easier for the person who needs the services to direct how he/she would like to receive them. 8:49:13 AM RIC NELSON gave verbal testimony in support of SB 174, which was then interpreted by Charles Hudson, as follows: My name is Ric Nelson, and I work for the Governor's Council on Disabilities and Special Education. ... So, I would like to mention a couple of things. March is disability awareness month. And we have about 11,500 people with disabilities in Alaska right now. So, for my own story: I've received a waiver for the past 12 years, and if I didn't have a waiver, I don't think that I would be where I am right now. I have three degrees, and the latest of those degrees is a Master's in Public Administration. And after my Master's in Public Administration, after I received that degree, I was hired to work for the council. And I make decisions on the services that I receive. And I think the people that are receiving services should have the same opportunity, because we're all human beings, and we should have the same opportunities as anybody else. And I think that we should have the final decision to have the care that we need at the right time and at the right place. So, I urge you to pass this bill, please. 8:54:27 AM The committee took a brief at-ease at 8:54 a.m. 8:54:54 AM CO-CHAIR PARISH noted that Duane Mayes was available for questions. CO-CHAIR PARISH opened public testimony on SB 174. After ascertaining that there was no one who wished to testify, he closed public testimony. 8:55:41 AM REPRESENTATIVE SADDLER asked Mr. Mayes for information regarding the number of people with disabilities of various types in Alaska. 8:56:01 AM DUANE MAYES, Director, Anchorage Office, Division for Senior and Disability Services (DSDS), Department of Health and Social Services (DHSS), said there are just under 12,000 people with disabilities [in Alaska]. There are roughly 120,000 to 125,000 seniors 65 years of age and older with disabilities. REPRESENTATIVE SADDLER asked how the provisions under SB 174 would help DSDS reach its goals in serving the people of Alaska. MR. MAYES prefaced his answer by sharing his background. He said both his parents are deaf and communicate through American Sign Language and struggle to understand English. He explained that American Sign Language has a grammar and syntax different from English, and he had to help his parents interpret English so that they were able to make sound decisions. Mr. Mayes said when he was in high school, he worked with students with developmental disabilities to create a support system. MR. MAYES opined that SB 174 is "a very defining bill." He said it makes sense. The division would train care coordinators to understand the person with disabilities is in the driver's seat. Further, the division would work to build natural supports, such as the example of a person with disabilities going to a movie with others. He said natural support is not going to cost the state money. He predicted that over time the state would realize an efficiency on this model, which he opined should have been tried a long time ago. REPRESENTATIVE SADDLER asked Mr. Mayes to talk about how HB 336 and SB 174 compare and how they would interact. MR. MAYES said both bills complement a person-centered model where there is supported decision-making, much like how he helped his parents when he was in high school. He said SB 174, in particular, "puts the individual back in the driver's seat, helping them to kind of craft their plan, looking to some of those natural supports that can be built into the plan." He opined that the marriage between the two bill is important. REPRESENTATIVE SADDLER noted that SB 174 has a zero fiscal note. He asked Mr. Mayes to give his perspective on the long-term financial implications of SB 174. MR. MAYES replied that he does not see SB 174 as being a burden on the state, because there would be efficiencies in state resources. 9:01:50 AM REPRESENTATIVE DRUMMOND said as a former school board member and current chair of the House Education Standing Committee, she sees many services provided in the preschool and K-12 system for children with special needs. She asked if there is an intersection between the numbers of people served in the state in the K-12 system and adults beyond the system and whether Mr. Mayes expects any impact on the K-12 system with "the shared vision of this ... bill." MR. MAYES answered that he does not see that as being an issue. In response to a follow-up question regarding the 12,000 figure, he said a small percent of that number is comprised of those in K-12. He repeated the information from Ms. Stiehr that 2,080 individuals are currently receiving services through the IDB waiver, and a small percent of those individuals are in the education system. REPRESENTATIVE DRUMMOND added, "As well as children with complex medical conditions." MR. MAYES responded in the affirmative. 9:03:53 AM COREY GILMORE testified that he receives services through the waiver mentioned by Mr. Mayes. He said he supports SB 174, because currently "everything is about us but not directed by us." He said a plan of care for a person with a disability states everything that the person with the disability agrees to do. He indicated there may be an hour to an hour and a half where people talk about the person with the disability and then maybe five minutes when they ask the person what he/she wants to do. He said, "We need to turn that on its head." He said, "Some people need help with that, and that's fine - that's okay - but as much as possible, those of us who have to live with this kind of chair need to be directing it." In response to Co- Chair Parish, he said he works in the community and has the honor of serving on the Governor's Council on Disabilities and Special Education, although he was testifying on his own behalf. 9:06:44 AM REPRESENTATIVE SADDLER noted that Mr. Gilmore was working toward becoming a youth pastor, and he asked if SB 174 aligns with any of the spiritual principals he teaches. MR. GILMORE responded that he always says life requires participation and he teaches that more important than believing in God is for us to do our best for God and to help others. He said part of SB 174 is about living better. He said a typical goal of someone with a disability might be to brush his/her teeth every day. He said one of his goals is to get to school. He indicated that SB 174 is about learning to write a plan of care that addresses what [a person with a developmental disability] wants and needs. Mr. Gilmore concluded, "I feel called to make a difference." 9:08:49 AM CO-CHAIR PARISH announced that SB 174 was held over.
|SB 174 Supporting Documents - Written Testimony - Laura Bonner - 3.13.2018.pdf||
HCRA 3/13/2018 8:00:00 AM
HHSS 3/29/2018 3:00:00 PM