HB 127-HOME AND COMMUNITY-BASED WAIVER SERVICES  3:22:23 PM CHAIR PRAX announced that the next order of business would be HOUSE BILL NO. 127, "An Act relating to home- and community- based services under the medical assistance program; and providing for an effective date." 3:22:50 PM REPRESENTATIVE MINA, as prime sponsor, explained that HB 127 would allow Medicaid reimbursements for legally responsible individuals who provide care services to family members. She stated that to qualify the individuals would need to become a personal care assistant and be hired by an agency. She stated that currently this is prohibited by state law, but it has been a pandemic-related flexibility allowed by the Centers for Medicaid and Medicare Services. 3:23:37 PM CHAIR PRAX opened public testimony on HB 127. 3:24:12 PM REINA YOUNG, representing self, testified in support of HB 127. She stated that she has six children, four of which have special needs. She stated that there are not enough care providers in the state, so she provides care services to her children while also working a job outside of the home. The other option would be placing her children outside of the home. She shared that she provides her children with social and emotional learning, life skills learning, education, and personal care, all on one parent's income. She argued that HB 127 would help her family and many others to be more financially independent, as parents would not have to rely on welfare programs, and families could stay together. 3:26:55 PM KATHERINE CRONLUND, representing self, testified in support of HB 127. She shared that she works at a local company and is a direct service provider for her two children with special needs. She stated that one in five Americans has a disability, but every scenario is different. She stated that her children have qualified for the support waiver for the last five years, and within this time they have had seven different providers; however, the providers were unable to accommodate the family's schedule with speech and occupational therapy. She stated that her family had gone months without providers. She explained that during the COVID-19 pandemic her work hours were shortened, which was financially hard, but this ensured she was able to be there for her children. She explained that many children learn with simple instruction, but her children need constant repetition of tasks and reminders. She added that this is a full-time job, and she has developed coping mechanisms. She stated that under her care the children have made "great improvements." Working at home has given her the flexibility to work around their schedules and needs. She stated that in-home care for children with special needs helps them to become independent and functioning members of society. Allowing family members to receive pay as care givers relieves constant worry and stress. She argued that the program would not only benefit children with special needs, but it would benefit the state in the long term. She asked for the committee's support for HB 127. 3:31:46 PM REPRESENTATIVE SADDLER commented on the testifier's dedication. He questioned whether she has had any training in applied behavioral analysis (ABA). MS. CRONLUND responded that she has not had any formal training, but she has researched and joined support groups. She referenced her background and real-life experience and said that if something does not work, she reaches out to different resources and uses the ABA approach. REPRESENTATIVE SADDLER encouraged Ms. Cronlund to contact the Governor's Council on Disabilities and Special Education. He said this is a clearinghouse of information about ABA therapies and treatments. 3:34:02 PM WENDY MENZE, representing self, testified in support of HB 127. She shared that she has lived in Juneau for 20 years and takes care of her adult daughter, who suffered cardiac arrest in 2020. She stated that her daughter had spent two months in a medical center in Seattle, and now she is completely immobile, has limited verbal communication, and spends most of her time in bed. She explained her daughter's husband was unable to be there as support; therefore, her daughter's young children also live with her and her husband. Because there are no available caregivers in Juneau, for the past 2-plus years they have provided care. She had inquired about receiving pay for providing in-home care but was told that the state could not do this; however, as of January 2022 she has been getting paid. She stated that financially she and her husband are able to take care of themselves, but the extra money helps pay for things she cannot afford and things for the grandchildren. She stated that it would be a burden if the current pay were revoked. She urged support for HB 127. 3:39:07 PM JANET JOHNSON, representing self, testified in support of HB 127. She shared that her 23-year-old daughter has multiple disabilities and now lives in Anchorage. She stated her daughter does not seem severely affected because she has been given "incredible care" during her life; however, she does need a great deal of assistance. She stated that while her daughter lived at home in Cordova, the family went almost two decades without any care givers. Because they live remote, her son was allowed to provide care and be paid. She stated that this had "saved them," and now her daughter is thriving because of the family care. She stated that she is "self-trained" to care for her daughter and considers herself a professional. She reiterated that because families can give extra complex care, they can be "great" caregivers. She urged support for HB 127, as it would strengthen a family's ability to provide care to their loved ones. 3:45:33 PM MS. JOHNSON, in response to Chair Prax, stated that all of her training had been "on the job." 3:46:04 PM MS. JOHNSON, in response to Chair Saddler, stated that before the COVID-19 pandemic the agency had separated care into levels with different pay rates; however, because of the pandemic her son was paid $14 per hour for a 40-hour workweek. She added that this "helped immensely." She stated that it takes work and actual physical activity, because it is not always about learning and speaking. In response to a follow-up question, she stated that care hours had been authorized; however, her family went for 20 years without finding staff. She stated that her daughter is "complicated," and staff did not last long. REPRESENTATIVE SADDLER remarked that caring for a loved one with disabilities is "a 24/7 job," and this provision would provide pay for only 40 hours per week. He expressed the opinion that it will not fully compensate individuals for all the hours put in, but at least it is something. MS. JOHNSON responded in agreement. 3:49:54 PM MARIE GOMEZ, representing self, testified in support of HB 127. She shared that she has lived in Anchorage since 2015 and is an unpaid caregiver. She stated that she began taking care of her mother in 2018, and it is challenging because she gets very little sleep. She explained that the only help she receives is a nurse who comes two days a week. She relies on the community and church for basic needs; however, receiving pay for the care would change their lives, as now they live in poverty. She stated that she is "happy with what we have," but prices are going up, and they are living off of her mother's social security income. She stated that with more money they could be eating healthier foods. She concluded that families receiving pay for providing care would help elders live their best lives. 3:55:53 PM CHAIR PRAX, after ascertaining that there was no one else who wished to testify, closed public testimony on HB 127. 3:56:03 PM REPRESENTATIVE SUMNER thanked the bill sponsor, as HB 127 would have a substantial, positive impact on many people in the state. 3:56:38 PM REPRESENTATIVE RUFFRIDGE moved to report HB 127 out of committee with individual recommendations and the accompanying fiscal notes. There being no objection, HB 127 was reported out of the Health and Social Services Standing Committee.