SENATE HEALTH, EDUCATION AND SOCIAL SERVICES COMMITTEE February 4, 1999 3:34 p.m. MEMBERS PRESENT Senator Mike Miller, Chairman Senator Pete Kelly, Vice-Chairman Senator Gary Wilken Senator Drue Pearce Senator Kim Elton MEMBERS ABSENT All Members Present COMMITTEE CALENDAR Briefing by the State Independent Living Council PREVIOUS SENATE COMMITTEE ACTION None WITNESS REGISTER John Woodward, Chair State Independent Living Council Anchorage David Jacobson, Director ACCESS Alaska Fairbanks Joyanna Geisler, Member Task Force on Long-Term Care Homer Cindy Lynn Petersburg Ruth L'Hommedieu, Board Member State Independent Living Council Fairbanks Jerie Best, Board Member State Independent Living Council Soldotna Patrick Reinhart, Executive Director State Independent Living Council Anchorage David Maltman, Executive Director Governor's Council on Disabilities & Special Education PO Box 240249 Anchorage, AK 99524-0249 ACTION NARRATIVE TAPE 99-03, SIDE A Number 004 CHAIRMAN MILLER called the Senate Health, Education and Social Services (HESS) Committee to order at 3:34 p.m. and announced the Committee would be briefed by the State Independent Living Council(SILC). He invited John Woodward and Patrick Reinhart to introduce themselves for the record. JOHN WOODWARD, SILC Chair, Anchorage, introduced himself and Patrick Reinhart, SILC Executive Director. He stated that he suffers from a traumatic brain injury resulting from a car accident with a "large furry Alaskan critter" many years ago. He thanked the committee for allowing the SILC to present some ideas for improving the lives of Alaskans with disabilities, and hoped the committee could act on some of the ideas this legislative session. He stated the SILC is a body appointed by the Governor with 10 members, the majority of whom experience a disability. The SILC mission is to promote the independence of persons with disabilities so that they can live and work in their community. The relatively small council has a limited budget of 100% Federal funds, but it has an important role to play in the development of State policies relating to people with disabilities. MR. WOODWARD referred the committee to the Independent Living report in their packets for additional information about the council and its services. He then introduced David Jacobson. Number 064 DAVID JACOBSON, Fairbanks North Star Borough, thanked the Committee for the opportunity to talk about Assisted Living, part of a continuum of care that will help people with disabilities and the elderly to continue living in the least restrictive environment. The model is aptly described in the Long-Term Care report which identifies the genesis of the Assisted Living program. In 1994, Governor Hickel promoted the concept of available, affordable long- term care in the state, and believed that the care should be in a "homelike setting." We've made dramatic progress in a short time. Now over 200 Assisted Living homes exist in the State, mostly located in Anchorage, Fairbanks and Juneau, with a few in Soldotna. The rural areas of the State do not have this type of service available to individuals. Number 093 MR. JACOBSON stated the Long-Term Care Task Force addressed some recommendations to apply to the Assisted Living Care model. These included standardization of services; that the services be in the least restrictive environment for the individualized needs of individuals; and a definition of services provided in "a homelike setting" when establishments in Anchorage have up to 80 residents. MR. JACOBSON discussed the lack of consistency in the issuing of licenses by both the Department of Administration and Division of Developmental Disabilities. The HESS Committee in the task force report targeted licensure for standardization. The report also encouraged entrepreneurs to take on Assisted Living as a viable business, and it identified a need for additional training. Now there is a minimum level of one-day training offered through the Division of Senior Services that is required to become an "Assisted Living Home Administrator." Other needed training would involve helping residents to live in the least restrictive environment. MR. JACOBSON concluded by saying that expanding the Assisted Living services to more communities would keep people from having to leave their home community in order to find services unavailable locally. Number 125 SENATOR WILKEN asked Mr. Jacobson if he just got this new job, and what he did before. MR. JACOBSON described his earlier background. He has been both a peer counselor and administrator, and now he is Director of Access Alaska's offices and programs in Anchorage and Fairbanks. He stated his wholehearted belief in Independent Living as a true investment in our own communities with manifold returns, both in reduction of expenses and an increase in the quality of life to citizens of Alaska. SENATOR WILKEN remarked that Mr. Jacobson is very visible in the Interior and does a great job representing his people. Number 150 SENATOR ELTON asked Mr. Jacobson how much an investment like this returns in savings later on, on the assumption that Assisted Living is a much cheaper way to provide services to some Alaskans than institutionalized care. MR. JACOBSON replied the current reimbursement that business people receive is $34 per day for individuals residing in their home under this model. A Medicaid waiver averages about $13,000 a year, versus $80,000 to $90,000 when an individual resides in a nursing home. Joyanna Geisler will elaborate further when she discusses the personal care assistance model. CHAIRMAN MILLER stated he's worked closely with the Assisted Living providers in trying to raise their rates. Significant steps have been taken, with the providers now talking about licensing and training, and a trade-off where they would help with their insurance costs now that the State self-insures. MR. JACOBSON responded he's confident that with Chairman Miller and others like him, this model will improve. Number 180 SENATOR WILKEN asked the status of the Assisted Living report. SHARON CLARK, Committee Aide, responded the HESS Committee still hasn't received it from Anchorage, but it is en route. Number 188 JOYANNA GEISLER from Homer asked HESS to draft legislation that will change Personal Care service delivery in the State. Personal Care services are the backbone in the continuum of the long-term care services mentioned by Mr. Jacobson. Some services people need in order to stay in their home may be just bathing and dressing assistance to go to work or shopping, to church or to social activities. Personal Care attendants in Alaska are underpaid and underappreciated. There's a real shortage of them, and in most of rural and Bush Alaska, the services don't even exist. Without these services, people might stay in an unsafe home environment that will force them to a more restrictive setting that is more costly, and may be outside of their own community. Number 217 The task force has studied the system for a couple of years, trying to keep the good and looking at other states' models to fix the bad. MS. GEISLER stated one needed change would eliminate the model of personal care services and replace it with the self-directed model, allowing a recipient to direct their own services - that is, to recruit, hire, manage and fire their own personal care attendant. A lot of individuals are capable of that management. Accompanying the self-directed model is a limited exemption to the Nurse Practices Act, allowing the individual to direct the personal care attendant to perform some limited health maintenance tasks such as bowel/bladder care. Other states using the self-directed model find it a "win-win situation" because it's cost-effective, because those recipients who are capable can direct their own care, and because a fiscal agent would act as a pass-through and a supportive umbrella. The personal care attendant has their liability insurance and workman's compensation paid, and has some financial security and a career ladder established so they can advance in their profession. For individuals who cannot do the self-directed model, a personal care agency model helps with the hiring, recruitment and scheduling of the personal care attendant. This system exists now, but only one provider is allowed in a region. MS. GEISLER advocated multiple providers in a region to provide a choice and to develop a work force in local communities. Number 264 MS. GEISLER continued, stating another need is to study the true cost of personal care services, and to change the reimbursement rate to reflect it. Currently, a supplemental grant goes to provider agencies to supplement the cost of care. Under this change, the supplemental grant would return to its original intent, allowing personal care services to be purchased on a sliding scale by non-Medicaid eligible folks. MS. GEISLER repeated that legislation is needed for full implementation of the self-directed model, and regulatory changes. She or Patrick Reinhart would be glad to help with any of the changes. Number 280 CHAIRMAN MILLER mentioned SENATOR PEARCE's arrival for the record. SENATOR ELTON stated that a big problem in Juneau has been turnover of personal care attendants because of low pay. He expressed concern that easing the Nurse Practices component may open the door to "some scary things." MS. GEISLER replied that in other states, that was initially a concern to some providers, and definitely to nurses. Over a time of using this, nurses felt it left them "off the hook." This limited exemption is only for the person whose health care professional feels can take care of himself, and the self-directed model is an individual's choice. After a year of using it in Montana, the nurses really like it. CHAIRMAN MILLER asked Ms. Geisler and Mr. Reinhart to work with Sharon, the committee aide, in drafting legislation. He stated that HESS would be happy to introduce it as a committee bill. Number 312 SENATOR WILKEN remarked that Ms. Geisler taught the long-term health care task force a lot about Personal Care Attendants, and the need to build the foundation to keep people in their homes instead of institutions. He thanked her for her contribution. Number 325 CINDY LYNN, Petersburg, discussed the Certificate of Need, stating a two-year moratorium on adding nursing home beds is now up. The history of requirements for a Certificate of Need have only included accessibility, quality, and any project over $1 million in cost. The number of seniors in Alaska will increase and the state will need more money to care for them. Community-based services have been documented to cost less and save the State money. These include the Choice Waiver Program, Personal Care Assistance, Assisted Living Centers, Adult Day Care Centers, Home Modification, Independent Living Services, and Meals on Wheels. Approximately 80% of long-term care patients end up on Medicaid after they've exhausted their resources. Medicare and private medical insurance like Blue Cross will not pay for non-skilled care, which long-term care is. Skilled care includes tasks like physical therapy, IVs and procedures. Most old age conditions include Alzheimer Disease, Parkinson's Disease, strokes and dementia, and none are covered by private insurance or Medicare, so that Medicaid or Alaskan taxpayers inadvertently have to pay. Most seniors don't know that. MS. LYNN referred to a study that showed 50% of patients in long- term care didn't need to be there for the level of care. Each additional bed added to a long-term care facility is a permanent cost to our State. With a Certificate of Need, long-term care is asking for a mortgage, with the State of Alaska as the bank. MS. LYNN described what it would be like to leave your home for a 4-bed ward. You'd give up the privacy to eat or watch T.V. when you want; all of your possessions; a visit from a friend without everyone listening; and private phone conversations. Some dignity and pride is lost, as well as independence and quiet. It's a big decision, and it's not for everyone. Many steps can happen before a person needs that level of care. Petersburg doesn't have an Assisted Living facility yet but there are two options for people. A 23-bed HUD housing facility had to solicit ten of the beds to out-of-state people because there weren't enough people in town to qualify. The long-term care facility costs $9,000 a month. People have the option of paying that, but MS. LYNN knows a woman who was wiped out financially after paying for 18 months. Most people end up having to go on Medicaid. One family had a qualified Nurse's Aide who lived in their home for $3,000 a month. The average cost of Wrangell's Assisted Living facility is $2,000 a month. Number 399 MS. LYNN stated that long-term planning is not so different than estate planning, and can involve a variety of community-based services. A long-term care facility often isn't needed until the end of life, if a person is terminally ill and doesn't want to have Hospice in their home. The long-term care facility can be used intermittently, but then with proper supports the person can return to their home. A Personal Care attendant coming in and helping them bathe, talking to them and keeping them oriented can keep people safe enough to be in their home. Medicare will fund programs for nursing visits to the home for skilled procedures, also keeping the person out of long-term care. The Choice Waiver program has a long waiting list, and needs more funding. It makes more sense to fund those programs than to increase nursing beds. Number 420 MS. LYNN asked the Committee to adopt the draft amended legislation in the appendix, and the recommendation in Mr. Lindstrom's letter from the Department of Health & Social Services that follows. These are practical and logical requirements for a Certificate of Need. Number 433 RUTH L'HOMMEDIEU, Fairbanks, stated she has served on the SILC since 1995. One area of concern for the disabilities community relates to Medicaid Co-Pay, also known as the Medicaid Buy-In Bill. HB 459 passed last year, but there have been delays and the program has not yet been implemented. She asked the Committee's help in encouraging DHSS to implement it. SENATOR KELLY asked her to describe the Medicaid Buy-In. MS. L'HOMMEDIEU replied it allows people to buy in on their insurance coverage, so they could go to work but not lose their insurance coverage that keeps them maintained to work. MS. L'HOMMEDIEU brought up the necessity to maintain the health coverage through Medicaid, the health care financing program for the categories of Alaskans who are poor or who have disabilities. Kidney dialysis is not available in Juneau, only in Anchorage and Fairbanks. Southeasterners go to Anchorage or Seattle for this service. Some people are forced to relocate near the area where they can obtain care, and others can't afford the care and end up dying. She requested a survey of the private sector to encourage a kidney dialysis business in Juneau. A price quote she obtained from the Alaska Kidney Center in Anchorage for a kidney dialysis machine starts at $13,000. Number 499 MS. L'HOMMEDIEU concluded by asking the committee's support for the Governor's budget funding level for the Division of Vocational Rehabilitation, and to retain the Maintenance of Effort Agreement between the State and Federal governments for matching funds. SENATOR ELTON promised he would talk to the CBJ Assembly about the dialysis machine. Number 518 JERIE BEST, Soldotna, said she's served on the SILC since 1995 and thanked the Committee, stating she had watched the Governor sign two bills HESS had sponsored last year. She brought up the Americans with Disability Act improvements, and asked the Committee to follow last year's budget of $1.5 million to try to come into compliance. It's very difficult for a person with a disability to gain access to many of the state facilities. Alaska needs to come into compliance, it's the law. MS. BEST suggested adding a disclaimer on all state-generated paperwork that states "this is available in alternative formats upon request." If an 8-1/2" x ll" format was enlarged 137% on a photocopying machine on 11" x 17" paper, people with visual problems could read it. It is relatively inexpensive to do many things that are needed by people with disabilities. Number 560 MS. BEST brought up the need for more stringent laws dealing with disability parking permits. Her concern is in having enough room to get her wheelchair out of her car in a direct line to the curb without having to jump up the curb. The bill coming out would require photo identification on the blue hanger, making it invalid for anyone else to use it. She has handicapped plates, but travel requires the blue hanger for rental cars. She suggested tightening up the dates, using the Bureau of Vital Statistics to check deaths, and making it a moving violation instead of just a parking ticket. Senator Donley's bill would remove 2 points from the driver's license. Number 585 PATRICK REINHART, Executive Director, referred to the report in the Committee packets, Independent Living for Alaskans With Disabilities. Highlights include activities in FY 98 such as passage of the Assisted Technology Lemon Law and the Puppy Guide Dog law (HB 170). SILC found numerous state or federal agencies involved in doing or funding housing modifications to help people remain in their homes SILC clarified the housing modification providers in the State, and streamlined the eligibility criteria, hoping to build efficiency into the system with the same amount of money. SILC has led in coordinating transportation between providers in communities; for an example, when a van for the Headstart Program is finished for the day, it could be used to transport seniors to social and recreational activities. MR. REINHART stated that the five Independent Living Centers in the State are a little different in each community but are required to be consumer-controlled. The majority of the board of directors and the staff are people with disabilities. The services provided in FY 98 include information and referral, advocacy, transportation, interpreters and recreation. The State contributes about 21% of the $2.8 million in funding from various sources; 44% comes from the Federal government. The Centers are non-profit and do fundraising and collect fees for services. He offered to answer questions. SENATOR WILKEN asked what caused the large jump from $45.0 to $375.0 in the category "Other" on page 2, Budget Analysis? MR. REINHART replied he's not sure; it's the Mental Health Trust Board. MR. JACOBSON responded that in Governor's Council on Disabilities & Special Education, over $125,000 in grant money from the Mental Health Trust was received for accessible home modifications. DAVID MALTMAN, Executive Director, Governor's Council on Disabilities & Special Education, stated that SILC and his council work closely together. The enabling statute requires his council to do a budget analysis every year to help the public and the Committee understand the programs funded to serve people with disabilities. He clarified that the $45.0 in FY 98 was to study the closure of Harborview and personnel issues arising from its closure, and to determine the satisfaction of the residents and their families about their current placements. The funds for next year, FY 99 Authorized, is to study the dis-incentives of people with disabilities to go to work. They lose much of their public assistance and Medicaid, which the Council tried to address last year with the Medicaid Buy-In Bill. They also lose housing subsidies and other benefits that provide a large barrier to go back to work. CHAIRMAN MILLER announced that copies were faxed and are now available of the Alaska Rate Study in the Assisted Living report. He stated that HESS would not meet next Tuesday. Next Thursday, February 11, HESS will take up SB 31, the Mental Health bill on capital and operating appropriations, and move it on to Finance. The following Thursday, February 18, Jeff Jesse, Executive Director of the Mental Health Trust Authority will brief the Committee. There being no further business, CHAIRMAN MILLER adjourned at 4:35 p.m.