HB 292-HOME AND COMMUNITY-BASED WAIVER SERVICES  4:15:02 PM CO-CHAIR ZULKOSKY announced that the final order of business would be HOUSE BILL NO. 292, "An Act relating to home and community-based services; and providing for an effective date." 4:15:41 PM CO-CHAIR SNYDER, as prime sponsor, presented HB 292. She explained that the proposed legislation is needed because of the demand for in-home, long-term services and associated support. She stated that stakeholders have reported service level cuts for seniors, people with disabilities, and those who receive Home and Community-Based Services (HCBS) waivers and Community First Choice Medicaid State Plan K. She stated that these people are facing barriers to services, such as long waitlists and the inability to obtain the personal care assistant (PCA) of their choice. She observed that caregivers have seen fewer hours and lower pay over the last decade. She noted that rural communities have been impacted by the lack of homecare infrastructure. Because homecare is the only option which allows these individuals to stay in their rural communities, many Alaskans are forced to move away, denying them the option of maintaining dignity and independence. CO-CHAIR SNYDER stated that the proposed legislation outlines the following issues: declining wages of PCAs; the impact on the mostly female workforce; longer time spent on waitlists; budget cuts; service level reductions; and the over reliance on unpaid care. She stated that despite the growing need for personal care services, services decreased from 2016 to 2020 by 23 percent. These cuts have left individuals reliant on the unpaid labor of untrained friends and family, costing the state money in terms of economic productivity. She expressed hesitancy in reducing quality of life issues to economics, but "it is our job as legislators." 4:21:09 PM CO-CHAIR SNYDER explained that HB 292 would begin to help by preventing unwanted service-level cuts for personal care services by fixing the weak points in the statute. She explained that assessments which result in service level reductions would be required to go through the same detailed process for service level terminations. She added that previous service level cuts would be restored from 2019 to present. Finally, she stated the proposed legislation would permit legally responsible individuals to become PCAs under HCBS waivers and Medicaid State Plan K. She concluded with the example of a constituent who would be impacted by the proposed legislation. She described the individual as having cerebral palsy and using a wheelchair. The individual recently moved to Anchorage for better access to PCAs, but in the 8-month search one has not been found. It has not been economically feasible for the family to travel back and forth to Anchorage to provide care while working to support themselves. Recently the hours allocated for the individual to have homecare were cut. She described the situation as "a negative feedback loop." She maintained that HB 292 would begin to address these issues. 4:25:11 PM ALLIANA SALANGUIT, Staff, Representative Liz Snyder, Alaska State Legislature, on behalf of Representative Snyder, prime sponsor, paraphrased the sectional analysis of HB 292 [included in the committee packet], which read as follows [original punctuation provided]: Sec. 1: Amends AS 47.07.045(a) Home and community- based services for provisions in the section to apply also to Community First Choice and Medicaid personal care services programs. Sec. 2: Amends AS 47.07.045(a) Home and community- based services by: Introducing a process in statute for reducing hours or payment for home and community-based services provided under 1915(k) state plan option and Medicaid personal care services that mirrors the process for terminating services. • Adding "and live independently" as a condition for terminating services. • Requiring the department to continue following notice requirements provided in later sections. MS. SALANGUIT specified that the requirements for notification indicated in Section 2 are further laid out in Section 8. Passing ahead, she paraphrased from Section 8, which read as follows [original punctuation provided]: Sec. 8: Establishes the act will take effect only upon federal approval of the state plan for medical assistance, and that if approved, the Commissioner of the Department of Health and Social Services must notify the revisor of statute not later than 30 days after receiving notice. MS. SALANGUIT, picking up at Section 3, continued paraphrasing the remaining sectional analysis, which read as follows [original punctuation provided]: Sec. 3: Amends AS 47.07.045(d) Home and community- based services by: • Moving definitions for "independent qualified health care professional" and "independent qualified waiver" to this section. It does not create any new definitions. "Independent qualified health care professional" for an intellectual or developmental disability waiver is defined as a qualified intellectual disability professional under 42 C.F.R. 483.430. • For other allowable waivers, "Independent health care professional" is defined as a person who can provide personal care services under the 1915(k) state plan or a registered nurse with specific qualifications relevant to the waivers. Sec. 4: Adds a new subsection to AS 47.07.045 Home and community-based services that: • Establishes that once the department receives the results of an assessment they have 10 days to notify, in writing, the recipients or individuals with legal authority to act on the recipient's behalf of the assessment results. • Establishes that after the department decides if there will be a change in levels of services or payments for services, they have 10 days after the decision is made to notify the recipient or individuals with legal authority to act on the recipient's behalf of the decision. This notice must be done in writing and 30 days before the new determination goes into effect. The department must also inform them they have a right to appeal the decision. • Allows legally responsible persons to provide personal care services to an individual eligible for home and community-based services waivers and Community First Choice. Sec. 5: Adds a new section that creates a path for hours to be restored through the proposed reassessment process for recipients of care whose payment for services were reduced between January 1, 2019 and January 1, 2022. Sec. 6: Adds a new section to instruct the Department of Health and Social Services to amend and submit a state plan for medical services to the Centers for Medicare and Medicaid Services (CMS). Sec. 7: Makes section 5 retroactive to January 1, 2019. Sec. 9-10: Create two effective dates: • For sections 1 4, effective date will be the day after the revisor of statutes receives notification from the Commissioner of Health and Social Services of federal approval of state plan amendments. • Sections 5 and 7 take effect immediately upon passage 4:29:50 PM KATHERINE BACON, representing self, stated that she had been the primary caregiver for her medically fragile granddaughter. She stated that her family had had no experience with special needs individuals, "but we learned." Her granddaughter is now 24 years old. She continued that beginning in 2003 she became the primary caregiver to her late husband suffering with Alzheimer's disease. Now she is the primary caregiver [to his grandson, Michael]. He had a traumatic brain injury when he was 3 months old, which resulted in multiple lifelong issues. Even though he was not expected to live, she said he would soon be 30 years old. She shared that over the years she has hired and worked "alongside more caregivers than I can count." She indicated that she does not blame the caregivers, as they receive inadequate pay and too few hours. She stated that caregivers often have to "cobble together" full-time schedules by juggling multiple clients or taking other jobs, and then, often, they leave to take better jobs. The caregivers who stay cannot provide sufficient care because they are overburdened and exhausted. She stated that the needs of individuals do not go away when hours are cut or caregivers are not available. She explained that she is now Michael's sole care provider, 24 hours a day, 7 days a week. She is fortunate she is paid to care for Michael, but the process for families to be qualified to receive care services, let alone to be paid, is long and hard. She argued that the people who know and love the individual should be able to care for them. She expressed the opinion that many caregivers struggle, and there is a "breaking point," and the proposed legislation would take the first step to repair the broken system by reducing barriers for vulnerable Alaskans. She thanked the bill sponsor. 4:35:14 PM MS. BACON, in response to Representative Spohnholz, explained that the process for her to be Michael's caregiver was not hard because she is not biologically related to him; otherwise, there are many steps, and it takes months. She stated that once the process seems to be final, there will be "another whole list of hoops." She added that she knows people who have been disheartened and gave up. She expressed the opinion that it would be better for individuals to be at home with family [caregivers] as opposed to hiring people who may not "have their heart in it." She suggested [caregivers may not be invested in their clients] because of the low pay. 4:37:20 PM The committee took a brief at-ease at 4:37 p.m. 4:37:29 PM LEIONILEI JOHNSON, representing self, spoke in support of HB 292. She stated that she is a professional home health provider. She shared that she is Tlingit and an Eagle from the Thunderbird Clan. She said when she was a young girl, she had helped her mother care for her grandmother. Without their help her grandmother had no way to buy groceries, keep herself clean, and take care of her home. She expressed pride in her ability to help. She stated that she has been a professional caregiver for 10 years and has witnessed hours cut for client care, even for those who cannot get out of bed. In example, she shared that a client with Parkinson's disease needed help with many things. The client fell when left alone, but the state only approved 15 hours of care a week. She stated that she was worried, and the client was upset. After being in the hospital with a broken hip, the client's home was lost, and she lost her job. Against her convictions, she said, she applied for government assistance. Working in a different job, she said that she "made more money as a food runner in a restaurant" than she made as a professional caregiver. She said the restaurant job had been seasonal, and she became unemployed again. She stated she is doing her best to help elders in the community, but the system "is broken and it's hurting us all." She asserted that restoring cut hours would help clients be safe and help caregivers make a living. 4:42:47 PM AMANDA COLLINS, representing self, spoke in support of HB 292. She shared that she is a single mother and has been a caregiver for her 10-year-old child with disabilities for the child's entire life. She stated that her daughter's condition is complex, with many challenges, and she lost her job because of the needed full-time care. She indicated that she had applied for government assistance, and her daughter was deemed eligible for services, but the list had been so long the application expired before services could be received. She stated that she has had to reapply multiple times, but they still receive no services. She expressed the opinion that she is the most qualified person to take care of her daughter, but the circumstances weigh heavily emotionally, financially, mentally, and spiritually because she is totally dependent on social services for the basics to survive "day to day." She said, "I would love more than anything to be able to work and provide a stable income," but this is impossible because of her daughter's 24-hour care. She argued that HB 292 would help by providing pay to caregivers for the work they are already selflessly doing. She stated it would give her a chance to be less dependent on public assistance and an opportunity "not only to survive, but to thrive." 4:46:03 PM ALEXIS RODICH, Lobbyist, Service Employees International Union (SEIU) 775, stated that over the last year SEIU has spent significant time with caregivers in Alaska, speaking to them about their experiences in making ends meet while "doing the work they love." She stated that these caregivers are often women, people of color, and from immigrant communities. She cited that, while inflation is up, the wages of PCAs in Alaska are lower than they were a decade ago. She opined that wages are higher for jobs which have far less pressure or consequences, yet "their love for the work" makes caregivers want to stay in the profession. She said caregivers often take on two or three jobs, or they are forced out of the profession, which makes it much harder for those looking for a caregiver. She cited that while pervasive budget cuts have resulted in reductions in personal care services, Alaska has the fastest growing senior population per capita in the country. She reiterated that when caregiver's hours are cut the need does not go away; friends and family end up providing unpaid labor, and individuals are put in situations which could result in injury or hospitalization. She stated that HB 292 would create the initial steps to ensure those who need services and support are getting the level of care they need, allowing for dignity and independence in their own homes. It would also give stability to caregivers providing these services. She thanked the bill sponsor and the committee. 4:50:11 PM JOHN LEE, Director, Division of Senior and Disabilities Services, Department of Health and Social Services, in response to Representative Prax, explained that PCA certification depends on the agency and its requirements. The basic requirements would be passing a background check, completing first aid training, and completing training related to the skills needed for the client. He said there are various requirements depending on whether the individual will be supporting a client on a waiver program or a state plan. REPRESENTATIVE PRAX, repeating the question for Ms. Johnson, stated that he is trying to understand the effort required to obtain certification. 4:53:54 PM MS. JOHNSON explained it depends on the client because each client would require a certain type of care. She stated that an individual would need a background check, certification in first aid, and whatever training the company requires. REPRESENTATIVE PRAX questioned whether the requirements would be determined by the employer or prescribed by regulation. MS. JOHNSON responded that in her training she was certified to use a belt around the waist for helping the client move, to change the bed if the client is bedridden, to use a lift on a client, to bathe and clothe a client, and to use a feeding tube and catheter. She stated that a nurse would administer medication, and a physical therapist would work with the client. 4:56:39 PM REPRESENTATIVE FIELDS voiced an observation that there has been a net migration out of the state, which is a negative thing for the economy. He stated that he has observed an entire multigenerational family leave the state because they were unable to find care for an elderly family member. He expressed the opinion that keeping multigenerational families in the state would be good from a humane perspective and an economic perspective. He commented that the fiscal note on the bill is "tiny," and it is a small price to pay for supporting families in the state. 4:57:45 PM CO-CHAIR ZULKOSKY announced that HB 292 was held over.