JOINT HOUSE/SENATE HEALTH, EDUCATION AND SOCIAL SERVICES COMMITTEE February 12, 1997 3:05 p.m. HOUSE MEMBERS PRESENT Representative Con Bunde, Chairman Representative Joe Green Vice Chairman Representative Brian Porter Representative Tom Brice Representative Allen Kemplen Representative Fred Dyson HOUSE MEMBERS ABSENT Representative Al Vezey SENATE MEMBERS PRESENT Senator Gary Wilken, Chairman Senator Lyda Green Senator Jerry Ward SENATE MEMBERS ABSENT Senator Loren Leman Senator Johnny Ellis OTHER MEMBERS PRESENT Senator Georgianna Lincoln COMMITTEE CALENDAR Alaska Disability Policy Summit Progress Report WITNESS REGISTER NANCY DODGE, Chairman Governor's Council on Disabilities and Special Education 3010 Davis Road, Number B16 Anchorage, Alaska 99709 Telephone: Not provided KATHY PRIVRATSKY Assistive Technologies of Alaska Advisory Council 7201 Montagne Circle Anchorage, Alaska 99507 Telephone: (907) 333-2669 JERRY KAINULAINEN Assistive Technologies of Alaska Advisory Council P.O. Box 1629 Sitka, Alaska 99835 Telephone: (907) 747-4703 JENNIFER REYNOLDS Governor's Council on Disabilities and Special Education 1201 Brock Road North Pole, Alaska 99705 Telephone: Not provided SUSAN LOUDON Governor's Council on Disabilities and Special Education 118 Kathryn Avenue Fairbanks, Alaska 99701 Telephone: Not provided MARI JO PARKS Governor's Council on Disabilities and Special Education P.O. Box 1683 Palmer, Alaska 99645 Telephone: (907) 745-4536 DON BRANDON, Chairman Governor's Committee on Employment of People with Disabilities Office of Human Resources P.O. Box 755140 Fairbanks, Alaska 99775-5410 Telephone: (907) 451-9007 DAVID LEVY State Independent Living Council 2634 Forest Park Drive Anchorage, Alaska 99517 Telephone: (907) 563-2984 JERIE BEST State Independent Living Council P.O. Box 426 Soldotna, Alaska 99669 Telephone: Not provided ACTION NARRATIVE TAPE 97-12, SIDE A Number 001 CHAIRMAN GARY WILKEN called the Joint House and Senate Health, Education and Social Services (HESS) Committees to order at 3:05 p.m. and welcomed everyone to the joint meeting. ALASKA DISABILITY POLICY SUMMIT PROGRESS REPORT CHAIRMAN WILKEN indicated the committees would hear the Alaska Disability Policy Summit Progress Report. NANCY DODGE, Chairman, Governor's Council on Disabilities and Special Education, said that she was chosen to introduce the other four chairmen and the groups they serve. She said all five of the groups are established under state and federal statutes with a specific role of advising the legislature and departments about the issues that impact people with disabilities in their families. MS. DODGE pointed out that the other four groups are: Governor's Committee on Employment of People with Disabilities with Don Brandon, Chairman; State Independent Living Council with Joy Anna Geisler, Acting Chairman; the State Rehabilitation Advisory Council with Thor Williams, Chairman; and Assistive Technologies of Alaska Advisory Council with Kathy Privratsky, Chairman. MS. DODGE said yesterday, they conducted the first Alaska disability summit focusing on public policies in the areas of community inclusion and support, health care, education, employment, housing and transportation. Number 81 KATHY PRIVRATSKY, Assistive Technologies of Alaska Advisory Council, said as long as people with disabilities remain segregated, nondisabled people do not get to know them and continue to believe that special training and clinical certification are needed to support them in their communities. MS. PRIVRATSKY said inclusion helps communities and citizens to realize they have the capacity to be with, befriend, care about, work along side, and learn with and from people with disabilities. Inclusion also enables people with disabilities to be full contributors to their communities. MS. PRIVRATSKY explained physical accessibility and access to transportation may be all that is needed for many persons with disabilities to participate in their communities. Some people with disabilities may need individualized supports such as personal assistance services or on-the-job training and support. MS. PRIVRATSKY said some people with disabilities may need assistive technologies such as teletypewriters (TTYs), voice synthesizers, grab bars or Braille keyboards to be included in their communities. Some families of people with disabilities may need support and resources such as respite care or in-home training in order for the family member with a disability to continue living at home. If community inclusion and support are in place, state activities around health care, education, employment, housing and transportation can address and meet the needs of people with disabilities. Number 111 JERRY KAINULAINEN, Assistive Technologies of Alaska Advisory Council, noted some possible legislative solutions to the presentation Ms. Privratsky just gave. He urged the legislature to provide funding to ensure state compliance with the American with Disabilities Act (ADA), to pass a lemon law for assistive technology devices and equipment, enact puppy guide-dog legislation, designate American sign language as a core curriculum requirement for another language under Bachelor of Arts requirements at all University of Alaska campuses, ensure that all Gavel-to-Gavel broadcasts are close captioned, provide adequate funding for services such as respite, in-home training, infant learning, orientation and mobility for the blind, interpreters for the deaf and personal assistance services. REPRESENTATIVE TOM BRICE referred to the lemon law and asked if, for instance, a wheelchair breaks down that was just purchased, when would Medicaid buy a new chair. MR. KAINULAINEN replied once every five years Medicaid would buy a new wheelchair. If a piece of equipment is defective and can't be repaired, they would not replace it for five years. SENATOR LYDA GREEN asked him to clarify the guide-dog legislation. MR. KAINULAINEN replied that the ADA provides for non- discrimination for people who have service animals for entrance into restaurant facilities, et cetera. and there has been some problems with some of the animals in their training, especially when they are puppies that haven't been certified. SENATOR GREEN asked if there are universities and schools that accept sign language as a substitute for a recognized foreign language requirement. MR. KAINULAINEN replied that they want to require it to be offered, not make it a requirement. Number 243 REPRESENTATIVE ALLEN KEMPLEN asked Mr. Kainulainen if his organization noticed any differences about life in the far North for people in wheelchairs, for instance, people who sometimes have to make their way in the streets because sidewalks aren't shoveled. MS. DODGE said she thought the Transportation Committees would be addressing that issue. She added that you can't get onto sidewalks, into buses, into lift vans, et cetera. SENATOR WARD asked where the ADA falls short in reference to the Alaskan way-of-life. MS. DODGE replied that there are so many areas that we are not in compliance on that it would take a long time. SENATOR WARD noted that he has been working with the DOT/PF on the ferry system which has new elevators on the smaller vessels and on ports and harbors and Prince of Wales Island. Even with the lack of regulations, he said, they are doing an excellent job of addressing accessibility. Number 319 MS. JENNIFER REYNOLDS, Governor's Council on Disabilities and Special Education, said she is a parent of a child with a disability. These are some thoughts she has collected from people from all over the state. Alaskans with disabilities have identified the lack of adequate health care and insurance as a major barrier to independent living and employment. The high cost of health insurance means that some people with disabilities go without health insurance. Some parents have had to relinquish custody of their children to the state to get medical coverage for them until a Medicaid waiver can be obtained. Although many people with disabilities have some private health insurance, few have adequate coverage that they can depend on to meet their needs, given preexisting condition exclusions, minimal benefit packages and benefit caps. MS. REYNOLDS explained the common needs of people with disabilities for durable medical equipment, assistive technology and personal assistance services are rarely fully covered. Many Alaskans with disabilities depend on public sector funding for health care; access to adequate and affordable health insurance is a major barrier to employment, since public health insurance is generally only available to people who are not working. Funding for eyeglasses, hearing aids, acute dental care and occupational therapy is not available to adults with disabilities who depend on Medicaid for their health care needs. SUSAN LOUDON, Governor's Council on Disabilities and Special Education, said she has a daughter who has developmental disabilities. She introduced some possible legislative solutions to the problems just stated. The first is to restore Medicaid funding for vision, hearing, acute dental and occupational therapy services for adults. MS. LOUDON said the second is to enact legislation for private insurance coverage that limits preexisting condition exclusions, improves portability and is affordable. MS. LOUDON explained the third is to ensure that whatever health care reform is implemented in Alaska includes the following features: Adequate consumer information; quality standards; adequate appeal and grievance procedures; and consumer governance. MS. LOUDON said the forth is to re-prioritize Medicaid options list to emphasize home and community-based services. MS. LOUDON said the fifth is to ensure that savings from the closure of the Harborview Developmental Center and the downsizing of the Alaska Psychiatric Institute are reinvested in home and community-based services for people with developmental disabilities and/or severe mental illness. Number 385 REPRESENTATIVE FRED DYSON asked if she had some model legislation from other states that could help them get started. MS. LOUDON said she believed there was and they would be happy to find it for the committee. REPRESENTATIVE DYSON said he had just spoken with a person who told him that it took about $2,000 for the state to get him a pair of sweat pants with zippers on the outside with big enough rings so that he could dress himself. It took seven visits with whomever it was he had to interface with in the state in order to get a pair of pants that cost $150. He asked if that was a typical problem and if they could easily solve that type of problem. MS. REYNOLDS replied that as consumers interface with state government more, it is becoming more family friendly. She said she would like to hear from the man he talked with to see what the policy problems were and added that there are a number of problems similar to that. REPRESENTATIVE DYSON said he understood the Administration was revising the purchasing procedures within the state to address issues like this and he wanted feedback from them on it. Number 413 REPRESENTATIVE CON BUNDE said he wanted to set the record straight - that the legislature sets the budget and it's the Administration's choice to take away the eyeglasses and the hearing aids. Number 428 SENATOR GREEN asked if the Kennedy/Kassenbaum legislation would impact Ms. Loudon's second concern of private insurance coverage limiting the preexisting condition exclusion. MS. LOUDON said it should. She added that maybe the Administration did this, but people with disabilities have no other resources and are always working towards going forward in their lives. If their glasses break or if they need new ones, it takes hundreds of dollars which they don't have. She strongly urged that insurance coverage be restored. MS. REYNOLDS commented that the Mental Health Trust Authority put up $1.5 million in its budget to bolster the state's part which she thought showed very good faith. REPRESENTATIVE BRICE said he sat on the budget subcommittee under the Hickel Administration when that happened and they had asked what options would fall off the table if Medicaid was cut. He wanted to clarify that it was a policy decision that was made by the legislative budget subcommittee in the Hickel Administration for FY95. MARI JO PARKS, Governor's Council on Disabilities and Special Education, said she was in attendance to speak on education and had a 25-year old mentally retarded woman with her. She said she had gone through the education system with enough funding so she was able to lead a full life. As a child, she was able to get into infant learning programs to get the kind of stimulation she needed to enhance her skills. When she entered school at age three she was able to get the physical and speech therapy, and other academic assistance she needed. As she entered kindergarten, she entered into a school district which gave her a free and appropriate public education. The individual education plans that were written for her, and then followed through with, helped lead her into a life knowing how to read and write, how to speak for herself and to interact with other students. The people who were with her learned also. The cost incurred from the inclusionary setting she was in was there, because the teachers needed to be trained. In fact, the entire school system needed to learn about how to deal with her and her disabilities. Training is a very essential part to make inclusion work. Education was the key that changed her life and the life of her family and society. MS. PARKS indicated she was in attendance to ask the legislators to support the changes to the education foundation funding formula which would decrease the over-identification of special education students and encourage prevention and early intervention activities in schools. It will also begin to provide the training needed by educators. MS. PARKS commented that American sign language is a program they would like to be accepted as equal curriculum standards for other requirements such as a foreign language or an English program in the Bachelor of Arts degrees. Learning how to communicate with one another takes many different forms. REPRESENTATIVE BUNDE asked Ms. Parks to explain "over- identification." MS. PARKS responded that as we have tied money to students and identification of a disability, there have been places where people have been able to over-identify by taking certain tests and qualifying. The Department of Education would like to address that problem perhaps by changing the funding formula and the process by which the department allocates monies for special education. Number 533 REPRESENTATIVE JOE GREEN asked if she felt that the amount of money allocated to education is proportionately granted to the teacher and the students themselves or may there be siphons before it gets to them that impair the quality of education. Because teachers are required to do more things than just teach, should there be a whole different look given to education? Maybe teachers should educate, but maybe something else needs to be done with all the social problems that teachers are facing in schools. MS. PARKS said she did feel that there is a strong need to have administrators to deal with the regulations and paper work that have to be monitored. Taking money away from students is a mistake; the money has to get to the classroom and meet the needs of every student. She thought it was important for all agencies to work together as a unified body to enhance students' lives. She used the COMPASS program as an example. REPRESENTATIVE BRICE asked how consistent were special education programs across the state. He elaborated that the foundation formula allows for a certain amount of money for children with special needs. That money is built into the foundation formula and the legislature passes that money to school districts to provide special education programming. He asked how consistently is that money applied to the various classrooms for special education across the state, for instance the same for Fairbanks as the Iditarod school district. MS. PARKS said she couldn't answer that, but people from the Department of Education could. She indicated she would research it and get back to him on it. Number 573 SENATOR GEORGIANNA LINCOLN said that she represents about 92 small communities throughout Alaska in which she thought there were special education needs, but not necessarily the resources to deal with those needs. A lot of that has to do with the transportation system and as long as people with disabilities remain segregated, non-disabled people do not get to know them and continue to believe that special training is required. SENATOR LINCOLN asked Ms. Parks if she would say it is correct that the resources are generally not there to address individual needs of special education students. TAPE 97-12, SIDE B MS. PARKS replied that the resources are differently approached. An example is the Special Education Service Agency which serves all of Alaska rural bush areas to meet the needs of the more severely disabled, but it's on a once a month or twice a month or to meet the needs of the student. It is not every day contact like her students get. So it is definitely different. She explained one of the things the Governor's Council has looked at is trying to make sure that in the education system through the universities that all teachers learn how to work with kids with disabilities. This really needs to be expanded so that kids have their needs met by the teacher they see daily. Number 582 MS. DODGE commented that with the closing of Harborview they are looking at bringing people back into their home communities. REPRESENTATIVE GREEN noted that we don't fare well compared to other states and the country doesn't fare well when we compare our children's scores against many other countries (the U.S. is 14th in the world). He said clearly there has been a change over the last couple of decades. He asked if there is a need to look at alternate types of skills and also asked if the mainstreaming concept is working, in her estimation. Is there a need to separate those students who are doing well from those who aren't and then concentrate our efforts on those who are not. MS. PARKS replied that she has a very strong bias in favor of public education. She has looked at our country's system as well as others and we are getting more for our money today than most countries get. What we are looking at, in many ways, is a different society. We have a society now where a lot of the support at home and the belief in education is so low that kids are not as motivated to get education. That is a major factor that we are facing. MS. PARKS said that recently they looked at Japan and one of the things that is different at the high school and junior high level is that the students concentrate on small amounts of subjects where our students are dealing with eight subjects a day. Just that kind of education alone is something that educators are looking at and asking if we are overloading our kids and that's why our test scores are down. She said there is room for charter schools, but we don't want to start segregating kids; we want inclusion because everyone benefits from learning together. MS. PARKS emphasized that school size might be an issue to look at. Number 550 REPRESENTATIVE BUNDE said he hears from parents frequently about the difference between mental and physical disabilities. He asked what he should say to parents that a behavioral problem takes 50 percent to 75 percent of the teacher's time while the other 20 children have settle for 25 percent of the teacher's time. MS. PARKS replied that if that is happening, the teacher has not had the proper training and the student is not getting the kind of support they need to make the inclusion situation appropriate. A teacher needs to be trained to say when she needs the help of an aide to get the student moving along in an appropriate situation so that everyone can learn. The parents need to be talked to and the student has a right to be there and peer examples work. Helping the whole classroom resolve the issue of one student taking too much time makes a powerful society and classroom. Number 533 DON BRANDON, Chairman, Governor's Committee on Employment of People with Disabilities, said that first of all disability is normal. People who experience them are normal people; it's our approach toward dealing with disability that is abnormal. We have come a long way in our society, but we still have some major barriers to overcome attitudinally in responding to people with disabilities. He said that 66 percent of Alaskans with disabilities are unemployed or underemployed. MR. BRANDON said he wanted the committee to remember four things which are attitude, access, accommodation and appropriate health care coverage. He thought if they could remember those four words, they could address some of the employment issues of people with disabilities. He explained that because of our separate attitude, we build facilities that are not accessible. MR. BRANDON said access to a working environment is denied. However, accommodation is becoming more a more prominent issue because of the Employment of Americans with Disabilities Act. Eighty-eight percent of the costs for accommodating a person with a severe disability costs less than $1,000. Fourthly, when you look at some of the barriers to employment, you have to look at appropriate health care coverage. MR. BRANDON explained some legislative solutions he proposes would be to enact legislation for private insurance coverage that limits preexisting condition exclusions, improves the transportability and affordability of health care coverage for people who are working; ensure that adequate health care and long term supports, including personal assistance services and assistive technology, are available to people with disabilities who are employed, seeking employment or changing jobs. Provide funding to enforce the Americans with Disabilities Act (ADA) and establish a guaranteed business loan program to promote entrepreneurship by people with disabilities. MR. BRANDON noted that special consideration was given to the state of Alaska and the arctic wilderness environment when ADA was passed. Title 5 of ADA requires a wilderness study looking at parks and recreation facilities. Number 488 REPRESENTATIVE GREEN asked how the degree of disability is determined considering there is such a tremendous spectrum. MR. BRANDON said they have based the definition of disability on the functional limitation that a disease or impairment causes on an individual who experiences the disability. REPRESENTATIVE BRICE asked how real is the loss of medical coverage to a person with a disability as a barrier to employment. MR. BRANDON answered that it is real significant because many times the job the person with a disability is applying for does not come with the health benefit coverages that are necessary to maintain a person's existence; that is the barrier of finding the right job. SENATOR WARD asked him to expand on loan opportunities. MR. BRANDON said that now there is nothing available, but he envisions a program, within state government which has been talked about in the legislature over the last ten years. He used the example of an electrician who had his arm blown off and had paralysis in some lower parts of his body. When he became medically stable and able to go to work, job opportunities would come open and he would go and apply for them, but the jobs would be given to people who were able-bodied. This went on for two years. So he sat down in his garage and started thinking about what he could do to survive and he started selling T-shirts out of his own garage. In the last 15 years he has become the largest producer of specialty advertising in Interior Alaska. He said that many people with disabilities have the ability to produce a business that is successful for them. Number 421 REPRESENTATIVE BRIAN PORTER asked if he knew what was happening to the bill the legislature passed last year requiring the state to guarantee the loan programs for assistive technology. MR. BRANDON replied that that loan program is currently available now. REPRESENTATIVE BRICE asked what the legislature could do to make government more consumer friendly. MR. BRANDON said he didn't know that it was unfriendly, but indicated Duane French, Director, Vocational Rehabilitation, could give him the information. Number 408 DAVID LEVY, State Independent Living Council, said he would be speaking about housing issues and that people want at least two things in life, a phone call from Ed McMann saying they won the $10 million sweepstakes and the other is access to affordable housing. He suggested they look at fully funding the Alaska Housing Finance Corporation, specifically to include $2.5 million in special needs housing and $750,000 in homeless services. It has been estimated that 40 percent of homeless individuals in the state of Alaska experience some form of a disability. MR. LEVY said secondly, he suggests for them to provide some direction and support to the AHFC to provide some grant writing and other technical skills to service providers so they can figure out how to bring more federal dollars into the state to utilize as a match. Thirdly, they should target state housing dollars towards rural communities. Finally, they should amend Alaska Housing Finance Corporation statutes and establish a down payment program that would allow people with disabilities to own their own homes or remain in their existing homes. SENATOR WARD asked Mr. Levy he had taken these requests to the AHFC Board. MR. LEVY replied that they have had initial discussions with them and they expressed some interest. He said they are continuing to work with them to make a joint proposal to the legislature, both administratively and legislatively. REPRESENTATIVE KEMPLEN said in Scandinavia there is a concept of co-housing where people join forces and pool their abilities to support one another in a home environment and asked if our disabled community had looked at. MR. LEVY said he had read some material on this and he would be happy to get more information for the committees on it and thought it would be very interesting to explore. Number 358 JERIE BEST, State Independent Living Council, fitting together a piece of her wheelchair, said she wanted to illustrate that until you have been in a wheelchair and have gone into a public restroom in an airport or a ferry and had to take your wheelchair apart and then get stuck and rescued - not fully clothed, you haven't really lived. She said that people with disabilities have to make themselves fit into a situation which isn't always the best answer. MS. BEST pointed out accessible transportation is one of the keys to community inclusion. She said a lot of improvement has been made over the last five years and over the last year, substantial improvements have been made in the transportation system. She said that a lot of agencies have been funded to buy vans, but they only serve their own clientele and won't stretch the rules. MS. BEST said a minimum of four DOT/PF people came to their summit and that was another step in the right direction. She said only a few Alaskan communities have public transportation and even there it's limited because they have to be within one-half of a mile of the corridor. There are eligibility restrictions and limited hours of service and there are very few companies that provide accessible transportation. MS. BEST said in addition to the elimination of physical barriers, transportation access for people with disabilities includes the removal of structural, communication and environmental barriers. She mentioned that there are still a few curbs that need to be moved. MS. BEST explained expanded visual access such as signage, electronic message boards and teletypewriters are needed for the hearing impaired so they can contact a lot of the transportation facilities. They also need auditorial detectable warnings as well as some braille which is an easy accommodation, but they need to be made policies and priorities. MS. BEST said some legislative solutions were to provide additional operating and capital funds, including flexible capital funds for maintenance and operations, in order to expand public transit in Alaska and to fund more accessible rural transit services and other forms of rural transportation for both the general public and people with disabilities. Number 252 REPRESENTATIVE BRICE asked if it was easy for her to access transportation once she arrived in Juneau. MS. BEST replied that Juneau is really great because several agencies have gotten together. Under ADA, you can apply for an ADA paratransit card. This means you can go any place and ride the paratransit system. Number 227 REPRESENTATIVE KEMPLEN said there is the issue of money and being able to fund transportation for people. Other northern communities create quality living environments for all members of their society and recognize it is a lot more efficient and cost effective if they can concentrate their dollars into smaller areas. He thought it would be a lot easier to maintain an urban environment in a concentrated area. MS. BEST replied that that would not be giving her free choices and America is about free choice. If she makes the choice to live in south Anchorage she should have the same access as downtown Anchorage. She, as a disabled person, should not be forced to live in an environment that is more conducive to her disability. Ms. Best stated disabled people want to be a part of everyone else's lives. Number 172 SENATOR WARD noted that not all hotels were handicapped accessible. He said about four years ago there was a special ordinance for five cabs that were handicapped permitted and asked her if she knew anything about it. MS. BEST replied that she had talked with Guy (Indisc.) who owns Alaska Cab and he has no more handicapped accessible cabs because they had worn themselves out and he didn't have the funds available to purchase any more. SENATOR WARD asked if there were other places that did that. MS. BEST said she has some demonstration projects and other information that she would be glad to forward to him. Number 144 MS. DODGE thanked the committee on behalf of everyone for allowing them to speak to the committee today. She said they would be answering their questions within the next few weeks and would forward them a copy of yesterday's summit report. She said they have a state number which is 269-8990. CHAIRMAN WILKEN said that it had been a great meeting and the legislature had a plan to balance the budget over the next four years. He didn't want them to lose confidence in what they can do. He said the government is not going to pass the pain down to their customers, but send it up the ladder. He asked them to let the legislature know if they felt they were being pinpointed to balance the budget. He congratulated them on their summit and the way they have presented their ideas. ADJOURNMENT CHAIRMAN WILKEN then adjourned the meeting at 4:40 p.m.