JOINT HOUSE & SENATE HEATH, EDUCATION AND SOCIAL SERVICES COMMITTEE February 8, 1996 3:07 p.m. HOUSE MEMBERS PRESENT Representative Cynthia Toohey, Co-Chair Representative Con Bunde, Co-Chair Representative Gary Davis Representative Norman Rokeberg Representative Tom Brice, via teleconference HOUSE MEMBERS ABSENT Representative Caren Robinson Representative Al Vezey SENATE MEMBERS PRESENT Senator Lyda Green, Chairman Senator Loren Leman, Vice Chairman Senator Johnny Ellis SENATE MEMBERS ABSENT Senator Mike Miller Senator Judy Salo COMMITTEE CALENDAR Presentation of Disability Issues WITNESS REGISTER JIM BECK, Chair Statewide Independent Living Council P.O. Box 508 Palmer, Alaska 99645 Telephone: (907) 746-0230 POSITION STATEMENT: Gave brief statement and introduced speakers BETH LaCROSSE, Member Vocational Rehabilitation Advisory Committee P.O. Box 8552 Ketchikan, Alaska 99901 Telephone: (907) 247-2020 POSITION STATEMENT: Gave presentation on health care issues PEGGY BURGIN, Member Governor's Council for Disabilities & Special Education 1530 West 11th Avenue Anchorage, Alaska 99501 Telephone: (907) 278-2102 POSITION STATEMENT: Gave presentation on transportation issues JERIE BEST, Member State Independent Living Council Box 426 Soldotna, Alaska 99669 Telephone: (907) 262-7492 POSITION STATEMENT: Gave presentation on transportation issues MARI JO PARKS, Member Governor's Council on Disabilities P.O. Box 1683 Palmer, Alaska 99645 Telephone: (907) 745-4536 POSITION STATEMENT: Gave presentation on employment services BOB STARBARD 3853 Melrose Juneau, Alaska 99801 Telephone: (907) 789-5653 POSITION STATEMENT: Gave presentation on employment services NANCY DODGE 626 Second Avenue, No. 204 Fairbanks, Alaska 997 Telephone: (907) 456-6445 POSITION STATEMENT: Gave presentation on housing and residential services LESLIE YAMAMOTO, Member Governor's Council on Disabilities & Special Education P.O. Box 83496 Fairbanks, Alaska 99708 Telephone: Not Available POSITION STATEMENT: Gave presentation on support services CAROLYN PETER, Member Alaska Vocational Rehabilitation Advisory Council 108 Stewart Street Anchorage, Alaska 99508 Telephone: Not Available POSITION STATEMENT: Gave presentation on support services ACTION NARRATIVE TAPE 96-9, SIDE A Number 001 REPRESENTATIVE CYNTHIA TOOHEY called the meeting of the Joint House & Senate Health, Education and Social Services Committee to order at 3:07 p.m. House members present at the call to order were Representatives Toohey, Bunde and G. Davis. House members absent were Representatives Brice, Rokeberg, Robinson and Vezey. Senate members present at the call to order were Senators Green and Ellis. Senate members absent were Senators Leman, Miller and Salo. PRESENTATION ON DISABILITY ISSUES CO-CHAIR TOOHEY announced the calendar for the meeting was a presentation on disability issues. She asked Jim Beck, Chair of the Statewide Independent Living Council to come forward and begin the presentation. Number 030 JIM BECK, Chair, Statewide Independent Living Council, stated he was before the committee to introduce representatives of a group of dedicated Alaskans who volunteer a great deal of their lives to create an Alaska that values all its citizens, including those with disabilities. These individuals serve on the State Independent Living Council, the Governor's Council for Disabilities and Special Education, the Governor's Committee on Employment of Persons with Disabilities, the Alaska Vocational Rehabilitation Advisory Council and the Assistive Technologies of Alaska Advisory Council. Mr. Beck said they have been participating this week in a historic set of meetings. They met as five different bodies to look at ways they could coordinate and collaborate their services, which is essential in order to provide the most effective services in these economic times. They have been collaborating on the vision they all share for Alaska. This vision reveals the potential that we are all capable of realizing, and building on our core belief in the value of all citizens. They see an Alaska where citizens with disabilities can live with dignity in the community of their choice; where citizens with disabilities receive the services they need, not in institutions but in neighborhoods where we all live; where citizens with disabilities benefit from and participate in a free and appropriate public education system with friends, peers and neighbors; where citizens with disabilities reap the benefits and rewards of our educational institutions and other community services, enter into gainful employment or other significant activities, and rather than becoming an economic drain, become a part of local solutions to local problems; where citizens with disabilities exercise their citizenship, such as in a hearing like this; where citizens with disabilities, whether they use a wheelchair, walk with crutches, communicate with sign language, communicate with a device or technology, read Braille, experience a mental illness or any other disability, are able to participate fully, not only in our government, but in every other facet of life that Alaska offers. CO-CHAIR TOOHEY noted that Senator Leman arrived at 3:10 p.m. MR. BECK said big, complicated government programs are not needed to realize this vision of human potential, but what is needed is thoughtful investment in sensible programs: Programs that are coordinated and provided at the most local level, programs that value families and value the dignity of all Alaskans. Mr. Beck informed the committee they would be hearing about some of the specific components of this vision from Alaskans who serve on the boards and commissions, Alaskans who have a disability or have spouses, children or friends with disabilities. The components they will be discussing have been identified by their members as critical to the ultimate success of their vision. These components include issues of housing and residential services, transportation needs and services, employment needs, issues and services, health care issues, and support services that enable people with disabilities and their families to access the aforementioned services. MR. BECK said with the support of committee members and the expertise of this group, they feel this vision can be a reality. He announced the first topic area would be the health care issues. Number 101 BETH LaCROSSE said she is a member of the Vocational Rehabilitation Advisory Committee and disabled. The issue of health care of very important to her personally. Until she was eligible for Medicaid, she was responsible for all her medical costs which left her in considerable debt. With the cuts in Medicaid, she is no longer able to afford dental and optical services. Therefore, they need fully funded, accessible, comprehensive health care, which is an essential lifelong need for individuals with disabilities. She added that fully funded means each individual takes as much financial responsibility as they are able to; accessible means that health care services are available regardless of location and are in compliance with existing legislation; and comprehensive means interventional prevention services, assisted technology devices and services, wrap around services and all inclusive of health care services, as well as proactive and supportive services. MS. LaCROSSE pointed out that over 62 percent of adult public assistance recipients experience disabilities. Sixty-three percent of these people with disabilities are unemployed nationally, and two-thirds of them desire employment. There have been cuts in Medicaid funding and in areas of coverage over the last five years, including cuts in vision, dental, occupational therapy, hearing aids, signaling devices, speech therapy and others. Co-payments, which are now required, adversely affect low income individuals and reduce access to health care services. Personal care assistants and certified nursing assistants are the lowest paid health care professionals in the industry today and are in the highest demand. The Medicaid cuts can result in worsening medical conditions which in turn will result in high end costs, inappropriate use of emergency room services, decreased quality of life and reduced capacity for employment. She commented we now have a crisis-driven system rather than a proactive, preventative health care system resulting in increased costs. She noted that institutionalization costs range from $100,000 to $200,000 per person per year, whereas home-based costs average $35,000 per person per year. Some parents are forced to give up parental rights when they place their child into foster care in order to receive Medicaid benefits until a Medicaid waiver can be obtained. Health care is a resource; it should not be a legal problem. MS. LaCROSSE concluded some of the alternatives and options available are the use of the long-range planning commission's recommendations for funding, perhaps raising taxes, raising user fees, or decreased permanent fund dividends. Another alternative would be to have a permanent fund dividend medical option, similar to the college option currently available. Other options are the use of the permanent fund dividend reserve, streamlining billing processes for Medicaid waivers, and we must ensure there are no monetary cuts or reductions in services. Their recommendation is that Medicaid benefits be reinstated to 1993 levels. The justification for that is comprehensive coverage saves money by avoiding catastrophic health care costs and promotes the quality of life as well as expands employment. Medicaid waivers are allowing people to live outside nursing homes. Community-based services are functioning now and saving the state money. Additional money can be saved by utilizing more innovative service delivery systems. Flexibility in the Medicaid regulations for training and salary administration must be allowed. People with disabilities deserve to be fully integrated and not treated as second-class citizens. All of us must remember that health care is not welfare. Health care is about equality and inclusion. In many cases, health care is a life or death issue, and in every case it is a quality of life issue. Funding for Medicaid and health care should be considered an investment in Alaska's future rather than a liability for today. Number 218 PEGGY BURGIN said she represents all the councils on the transportation issue. She is a senior citizen who is concerned about accessible transportation for all Alaskans. Currently, there is accessible transportation without restrictions in only four cities statewide. CO-CHAIR TOOHEY noted that Representative Rokeberg joined the meeting at 3:20 p.m. Number 218 JERIE BEST is a member of the Statewide Independent Living Council and the Transportation Chairperson. She indicated there were a couple of issues she and Peggy wanted to discuss. First, they are looking for a resolution so no disabled Alaskan who needs accessible transportation is excluded. She shared the story of a relatively new quadriplegic in their area, who is one of those individuals who falls into the area of exclusions. For example, if there is an accessible van, he can't ride on it because of age discrimination; in other words, he's not over the age of 60. This individual has not only had a traumatic change to his lifestyle, but is in need of medical care. In order for him to go see his doctor, he has to make arrangements with the local nursing home and it costs him $70 round trip for about a six mile trip. She pointed out there are accessible vans in the area, but if you are not 60- years-old or married to someone who is 60 years old, you are not allowed to purchase rides on those vans. Thus, they are asking for a resolution to preclude the discrimination. Number 246 MS. BURGIN said that in some communities, one or more local agencies operate buses or lift vans for transporting elderly people and people with disabilities. Often the funding for these vehicles restricts the type of individuals who can ride on them. Poor coordination among agencies which have lift vans leaves service gaps where they need not exist. Transportation is a major concern for them. Number 253 MS. BEST asked the committee to note that there are two user groups presenting this issue and commented she is a user because it is difficult for her to drive a car anymore. They would like the resolution to remove barriers which prevent joint use of vehicles. Number 259 MS. BURGIN added they also request the enforcement of existing anti-discrimination statutes. Number 261 MS. BEST said they would like incentives to be provided to develop collaborative van usage agreements. Number 262 MS. BURGIN added they would also encourage coordination between state, federal, local agencies and user groups. Number 263 MS. BEST commented it is a relatively simple process for the legislature to do by resolution. Additionally, they are requesting some funding to enhance current transportation services, because accessible transportation is inadequate for disabled Alaskans. Number 268 MS. BURGIN remarked they support the Governor's Council on Disabilities and Special Education recommendation for a minimum of $500,000 capital projects which are fully accessible. Number 270 MS. BEST said as a group, they also support a $1 million allocation for accessible transportation operating expenses. Vans don't run without gas, drivers, tires and maintenance. Number 275 MS. BURGIN said they recommend that all accessible transportation funding be coordinated and/or administered by the Department of Transportation and Public Facilities through Bruce Wells, Transit Coordinator. Number 280 MS. BEST concluded they endorsed the recommendations of the Alaska Public Transportation System (APTMS) implementation plan as stated in Chapter 7. This plan is also an inventory of all accessible vehicles in the state of Alaska and is available through Bruce Wells. Number 284 SENATOR LYDA GREEN asked Ms. Best if she was the woman that Senator Green had spoken to on teleconference this past summer. MS. BEST responded yes. SENATOR GREEN said the work of the committee which was addressing the very problem that Ms. Best had just talked about is still ongoing. She thought the committee was meeting in the Mat-Su area this next week. MS. BEST said the nice thing about the Mat-Su is they have applied for a rural agricultural grant which will bring coordinators into the area to help coordinate the system. Through the efforts of United Way, it looks like Mat-Su will have a coordinated system. She commented the same is going on in Kodiak, so some strides are being made. However, their concern is when a public body uses public funds to purchase an accessible vehicle and gives it to an agency that denies everyone else use. SENATOR GREEN said the funding portion is what really caused the problem in Soldotna. In other places it looks like there is a workable solution, which avoids duplication, etc. MR. BECK stated the next issue to be discussed was employment services. Number 310 MARI JO PARKS commented that she represents the joint committees that met this week. Number 313 BOB STARBARD attended the joint council meeting as a member of the general public and got drafted. The issue to be discussed by Mr. Starbard and Ms. Parks was employment of individuals with disabilities, or the lack thereof. A person with disabilities experiences limited employment opportunities due to physical and/or attitudinal barriers existing in the state. The 1991 Harris Poll revealed that of the seven million persons receiving social security insurance (SSI) benefits due to disabilities, 63 percent wanted a job. These individuals are unemployed or under-employed not because they don't want to work or because they lack of abilities to work, but because of the barriers they encounter to getting employment. This is not only an issue of physical barriers, it is also an issue of attitudinal barriers in the arena of equal employment opportunities. While there are some training, education and tax incentive programs for employers, persons with disabilities and the general public, people with disabilities do not pursue employment or educational opportunities because they continue to be unaware of the existence of those programs or they fear the loss of a much needed benefit if they pursue them. Number 338 MS. PARKS said as a high school work study specialist for people with disabilities, she has the opportunity of working with students between the ages of 15 - 21. These are students who experience disabilities and she helps teach them how to work. She sees them progress from a person who has little to no skills to becoming independent, self-sufficient people who do need assistance at times in various ways. It is because of the success she sees, that causes her to become especially upset when she sees these people go out of the high school programs and have no job opportunities. They are on wait-lists and for many of them it's five or more years. By that time, they've lost many of the skills they learned in the high school programs. Therefore, some of the councils' recommendations for this joint committee are: 1) allocate funds to the Division of Vocational Rehabilitation for a consolidated and ongoing program to educate and train employers, business owners and the general public on the issues that affect them and the employment of persons with disabilities; 2) create some additional business incentives for businesses who employ persons with disabilities, for example, a bid preference and legislative recognition awards; 3) funding to be allocated in the amount of $4 million of the much needed $52 million for FY 97 to remove identified architectural barriers; and 4) include people who have disabilities in any plans for economic development, especially in rural Alaska. Number 364 MR. BECK announced the next issue to be discussed is housing and residential services. Number 367 NANCY DODGE stated their issue is a lack of accessible, affordable places to live for Alaskans with disabilities. Housing for Alaskans with disabilities is considered by consumers and advocates to be the number 1 identified need for people with disabilities. This information came out of public forums sponsored by the Alaska Independent Living Council. Many people who experience disabilities are on wait-lists for community-based residential services or public housing under Section 8. People with disabilities need to own affordable housing and need low interest loans with which to buy housing and that housing must be integrated into the community. Existing housing opportunities negatively impact independence, productivity and the integration of individuals with disabilities. Barriers to owning a house include the requirement for down payments, the individual's ability to receive financing with limited credit, and low to no employment. The homes that families with disabilities have found adequate in the past may require substantial modification to accommodate family members with serious disabilities. Often the family member has had to leave home, especially in rural areas, and travel to larger population centers to find adequate housing. The Alaska Housing Finance Corporation (AHFC) Special Needs Advisory Committee is responsible for identifying and implementing ways to meet the housing needs of Alaskans with disabilities. She told committee members that when they confirm appointments to the AHFC, the disability community would like a consumer to represent them. They recommend that the AHFC develop new lending programs to allow individuals who have disabilities to purchase their own homes. The AHFC and the Alaska Mental Health Trust Authority are also requesting funds for home modifications. All councils strongly support this budget request. The legislature has approved a $1.5 million AHFC expenditure to build three group homes for individuals with disabilities who are leaving the Harborview Developmental Center. Some people with disabilities need the structure of teaching family homes which are small community-based group homes that emphasize social skills development and deemphasize demeaning characteristics of institutions, as well as prepare individuals for total independent living choices. As the executive director of an agency that runs group homes, she is well aware of the fact there are budget constraints and that funding is drying up. As was previously mentioned, looking at this from a cost-need basis, the cost per individual per year is approximately $45,000 for a group home whereas the cost at Harborview is about $150,000, so there is a great savings. Number 398 MS. DODGE presented three recommendations for the legislature: 1) please support the funding requested in the Governor's budget under the AHFC and Alaska Mental Health Trust Authority for housing modifications; 2) when members are confirmed to the AHFC, ensure that someone recommended by the disability community is appointed to the corporation so the needs and interests of the disability community remain a top priority; and 3) continue to fund community- based teaching family programs rather than institutional facilities. Number 412 REPRESENTATIVE TOM BRICE joined the committee via teleconference from Fairbanks. Number 428 SENATOR JOHNNY ELLIS asked Ms. Dodge what percentage of the unmet need is represented by the three group homes for which AHFC is funding the construction. MS. DODGE asked Senator Ellis to clarify the question. SENATOR ELLIS said the group had calculated how much need there is for specialized housing for Alaskans who experience disabilities and the point that he was trying to make was that the AHFC's ongoing efforts really don't come close to meeting the need. MS. DODGE said that was true. She didn't have the exact numbers, but said she would be happy to get those for Senator Ellis. Number 435 CO-CHAIR BUNDE said as he understands it, the $1.5 million takes care of the Harborview problem, but it does not address other housing needs. CO-CHAIR TOOHEY said she was delighted the Harborview problem is being resolved and that it would be a big asset to Valdez, Harborview and its residents. Number 442 MR. BECK stated the next topic is support services for people with disabilities and families. Number 449 LESLIE YAMAMOTO said she has been a member of the Governor's Council on Disabilities & Special Education for six years. She represents two children with severe disabilities and wanted to share with committee members how their family has benefitted from the community-based services they receive. Because of these community-based services, both of her children have not required the more expensive alternative, which is institutionalized care. She briefly described for the committee what supportive services are available to them. Her family has benefitted a great deal from the respite care, which is absolutely critical to the preservation of the family. Primary care givers need a break and respite care allows that break from the stress of constant care. Respite diverts individuals from more expensive and unnecessary out-of-home placements, which takes the individuals away from their family. The council has identified 170 families for this top priority. Other supportive services are community-based and there is a wide array of those available. They are individualized depending on the needs of the individual and can include family supports, service coordination, respite care, personal care attendants, residential, transitional and vocational services, assistive technology, ways to manage inappropriate behaviors, family training, etc. All of these individualized services allow for natural support such as friends, neighbors and family members to provide services in rural and urban settings. They believe this is a good use of financial resources. The cost to the state has reduced significantly since individualized services began. Five years ago, Alaska paid $30,000 per person per year for individualized services; in FY 95, it was $13,827. The reduction in cost is directly related to the Division of Mental Health & Developmental Disabilities' policy regarding providing the services that the individual and family wants and needs, rather than a prescribed set of services. By contrast, institutional care at Harborview Developmental Center costs about $151,000 per person per year. It is clear to see the family approach is not only cost effective, but it allows us to care for our loved ones in our community. MS. YAMAMOTO stated there are 1,948 Alaskans who are unable to access their communities because they lack these supportive services. There are 658 Alaskans waiting for developmental disability services; 610 children between the ages of birth and three years of age waiting for infant learning programs; 600 requests for American sign language interpreter services were denied this year; 30 blind Alaskans need services to live in rural communities; and 50 or more Alaskans want to leave institutions but they need these supportive services. Ms. Yamamoto stressed that funding is needed for these community-based services. Individuals with disabilities need to be able to purchase supportive services they need in their community. MS. YAMAMOTO concluded that as citizens of the state of Alaska, everyone is aware of the condition of the state's finances. As a parent and on behalf of the community of people with disabilities, they are asking the legislature not to just cut programs, but to seriously share the hurt as they consider all the possible ways to assume financial success for the people of Alaska. Number 499 CO-CHAIR BUNDE said Ms. Yamamoto had cut right to the heart of the matter with her closing comments. He mentioned he had earlier shared with some folks that none of them had started this project wanting to make the hard decisions they face. He assured the group that decisions will be made with care and consideration. Number 508 CAROLYN PETER said she is from Fort Yukon, but currently living in Anchorage. She became blind four years ago while living in Fort Yukon and teaching for the University of Alaska Fairbanks at the extended campus in Fort Yukon. She was able to continue her teaching because fortunately they teach by audio conference and she didn't face the difficult task of getting around. At that time, she started going to the Alaska Center for Blind Adults in Anchorage during the summer for her training. She is very grateful for that type of training because it gave her back her life. She thought it was the end when she went blind; she felt her spirit die day-by-day as she thought she couldn't do things. She was taught at the Alaska Center for Blind Adults that she can do most things, except fly an airplane or drive a car. MS. PETER said she wanted to share some of her experiences and talk about how difficult it is when a person with a disability lives in rural Alaska. She went to the Alaska Center for the Blind for which she is very grateful, but going back home presented many difficulties. With her cane travel, she had learned how to follow curbs, how to cross street lights, how to listen to traffic flow patterns which were all very important to her because as a blind person she wants to be able to move from the rural areas to urban areas. When she got back home, she didn't find any curbs and was very nearly injured at a construction site that hadn't been completely surrounded. There is a desperate need for people to help make that transition back to the rural areas. She commented it would be nice to have care people and instructors in each community, but if that's not possible, there is a need for people to help with the transition. There is also a need for people to work with families in learning how to handle disabilities. Number 535 MS. PETER said currently her sighted guide is her 6-year-old grandson, Zack, who she is raising. She is learning to read Braille while Zack is learning to read in school. She commented his reading is progressing nicely because he does a lot of reading for her. CO-CHAIR TOOHEY said she is thrilled the groups have joined together because with that kind of unity, they will be able to come up with plans that will result in more community involvement, more church involvement, and more people involvement. She believes that we are going back to the days when people were a little kinder and a little more giving. She wished the group good luck in their endeavor. Number 558 MR. BECK said he was not aware of another state where all the disability-related councils have come together seeking ways to solve problems for Alaskans with disabilities. He thanked the joint committees for their time and their past commitments to advancing the rights of persons with disabilities. CO-CHAIR TOOHEY referred to the recognition of businesses that employ persons with disabilities and said she thought it was a wonderful idea. She urged the group to select a business in their community or district who they feel is qualified for this recognition and convey that information to their legislator. She commented it would help the state and the community. CO-CHAIR BUNDE added that the mechanism is in place currently where a legislative citation can be done for those businesses that truly are deserving of recognition, but the group needs to make those nominations. MR. BECK said they would be recognizing businesses and employers throughout the state at the local level as well. He noted that positions papers were available on all five of the issues that were presented today. ADJOURNMENT CO-CHAIR TOOHEY thanked the group for coming and their testimony. She adjourned the joint meeting of the House and Senate HESS Committees at 3:47 p.m.