SB 98-ADULT FOSTER CARE FOR DISABLED  2:15:43 PM VICE CHAIR HUGHES announced the consideration of SENATE BILL NO. 98 "An Act relating to medical assistance for recipients of adult foster care services; establishing an adult foster care home license and procedures; and providing for the transition of individuals from foster care to adult foster care homes." She stated her intent to hear an overview of the bill, a sectional analysis, and testimony on the bill. 2:16:51 PM At ease 2:22:48 PM VICE CHAIR HUGHES reconvened the meeting. 2:22:50 PM JOHN LEE, Director, Division of Senior and Disabilities Services, Department of Health and Social Services (DHSS), Palmer, Alaska, turned to Tony Newman to give the presentation on SB 98. 2:23:29 PM TONY NEWMAN, Deputy Director, Division of Senior and Disabilities Services, Department of Health and Social Services (DHSS), Juneau, Alaska, said he first wanted to describe the type of person this bill is meant to serve. This individual may have started life with a disability due to a range of conditions, from autism to Down syndrome, and sometimes with even more complex and serious medical conditions, such as cerebral palsy, cystic fibrosis, short gut syndrome, disorders that could mean a lifetime of intensive medical treatments and prolonged dependence on technology. Adding to their challenges, these children are also in foster care because their parents are unable or unwilling to give them the care that they need. At any given time in Alaska, roughly 20-30 children are in state custody with these types of disabilities. Thanks to the wonderful people who serve as foster parents in the state and the state's waiver programs for people with disabilities, these kids can enjoy a secure and safe life in a home sitting, not an institution, surrounded by people who know and love them and are often willing to care for them throughout their childhood. The need for this bill arises because of changes that occur when a child reaches adulthood. The foster parents are no longer able to offer traditional foster care once the child ages out of state custody. There are also some disincentives and obstacles that make it difficult for the foster parents to transition to some new type of caregiving arrangement, which in turn makes it hard for that young person to stay with the same people, who may be the only people they know. This may force the young person into a new living situation that can be a traumatic change. It may even require the young person to leave the home community. 2:25:38 PM MR. NEWMAN said that constituents of then state Senator Dunleavy brought these concerns to his attention. In 2017, Senator Dunleavy introduced a bill, SB 10, that sought to address the issue. That approach was still being refined when he left the senate, but his interest in addressing the issue remained. Several months ago he asked the department to find a straightforward and as simple a way as possible for the foster child and foster parents to remain together as a family when a child becomes an adult, if they so choose. MR. NEWMAN displayed a graphic titled Adult Foster Care for Disabled to illustrate how the bill attempts to provide a solution. The service structure at Senior Disabilities is fairly complex, but the diagram gets to the heart of the matter well. The diagram shows the typical current path for aging out of foster care and the proposed path. A child in foster care in a licensed child family home habilitation has a stipend of $157 a day or a foster care stipend of about $70 a day for these types of children and personal care services. An adult on a Medicaid home and community-based waiver receives adult family home habilitation at $126 a day with no personal care services in an assisted home with a license with a menu of additional waiver services. The proposed adult foster care would have stipend of $115 a day and personal care services and would be in a licensed adult foster home with a menu of additional waiver services. Constituents have said that personal care services are valued by foster parents because this can be some of the most exhausting and challenging work in raising these kids. 2:29:23 PM MR. NEWMAN said that the rate is reduced for children who go from child home habilitation to adult family home habilitation. They lose personal care services because greater independence and self-care is assumed for the adult. The adult family home habilitation is reduced because in adulthood they receive a wider menu of waiver services to promote their independence. Instead of a foster care license, if children remain in the same home, the foster parents need an assisted living license, which has considerably higher expectations for safety policies and procedures and space requirements. To summarize, when children become adults, the foster parents lose the foster care stipend. The children have lost the ability to receive personal care services, and foster parents would have to set up their homes to meet the licensing requirements for an assisted living home. While the young adult would have wider range of potential services to draw from, if they have a severe medical condition, their ability to take advantage of those services, like transportation or employment services, may be limited. Foster parents face high hurdles and difficult choices to maintain the youth in their homes. There are other living arrangements and approaches that the foster parents and the former foster children can pursue to stay together. The foster parents could increase the rates they receive by certifying as a group home, but those other options have expectations and drawbacks that are frequently less attractive. MR. NEWMAN said that SB 98 makes it easier for the former foster parents and foster children to stay together longer. Instead of offering adult family home habilitation, foster parents can be certified as adult foster parents and receive stipends with lighter expectations around providing habilitative services, but those pay more than a basic room-and-board style rate. Instead of an assisted living home license, the department would create a new adult foster care home license, with requirements that are more akin to child foster home than assisted living home. The menu of other services would still be available to those who could benefit from them. Best of all will be the continuity of care the bill will allow. Nobody would be forced into the new arrangement. These other options would still be available, but for those who want to stay together as a family, this could be an attractive option. 2:31:46 PM SENATOR BEGICH offered the clarification that he is seeing a continuation. The department is trying to maintain a continuum that respects the living arrangements that have worked for the youth as they transition into adulthood. It is tempting to receive a government block on the ability to do this. This is good public policy to ensure continuum of care for those who are less able to take care of themselves. MR. NEWMAN replied that is a perfect summary of the bill. SENATOR COSTELLO said she appreciates the bill. She has spoken to many foster care youth. She asked if there is an issue where one group of Alaskans is provided an opportunity and another isn't. She could see that a lot of other foster care youth would want to continue in their foster care home. She asked if there is a path for them. MR. LEE said he is engaged in dialogue with a consultant for the Centers for Medicare and Medicaid Services (CMS) to make sure that this will be a viable option to pursue and will receive Medicaid funding. He asked her to repeat the second question. SENATOR COSTELLO asked if there is a path forward if a family wants to continue with aged-out foster youth. MR. LEE answered if the children are not on a Senior and Disabilities waiver and are solely receiving services as a foster care youth, they become adults and they can make their own decisions, of course, in conjunction with their former foster care parents. He asked Chrissy Vogeley to offer more insight on that. 2:35:02 PM CHRISSY VOGELEY, Community Relations Manager, Office of Children's Services, Department of Health and Social Services (DHSS), Juneau, Alaska, said for youth not on waiver services, they can continue to live with their foster parents if that is agreeable to all. SENATOR REINBOLD asked what the stipend rates are based on. MR. LEE answered that the child family home habilitation $157 a day rates are set by the division with help from the Office of Rate Review. The $70 a day is an approximation for what a child at this level of need would require. The Office of Children's Services offers a foster care stipend that ranges from $30 to over $100 a day, depending on the child's need, so it is approximate $70 a day. The rate goes down to $126 a day for family home habilitation because it is assumed that the adults have a higher level of independence as adults. They also get a menu of additional waiver services, such as help with meals and transportation. That is why the rate goes down to $126 a day. His office came up with the rate of $115 a day for the adult foster care in consultation with partners. The office wanted to find a rate that was not as high as adult family home habilitation because there are fewer administrative requirements. The office wanted this to be attractive for those who want to pursue the adult foster care license without the administrative burdens. 2:38:20 PM SENATOR REINBOLD asked how the parents get this money and are there any parameters about how to use the money. MR. NEWMAN said his office will need regulations to work out the details about the expectations about the level of care provided by adult foster parents. It will be a lot like foster childcare. His office will take the lead from the way the Office of Children's Services provides payment to foster parents. VICE CHAIR HUGHES asked Ms. Vogeley to also respond. MS. VOGELEY said that foster care payments are paid monthly directly to foster parents in a manner of their choosing. SENATOR REINBOLD clarified the two options are direct deposit or a check. She asked if it is a lump sum for the entire month. MS. VOGELEY replied yes. SENATOR REINBOLD asked what happens if the care is only two weeks and a month's stipend has been deposited. MS. VOGELEY answered that she believes payments are paid after the month. There have been situations of overpayments and the office requests the money to be returned. SENATOR BEGICH offered that his sister was a foster parent and was paid after the fact. VICE CHAIR HUGHES asked how many disabled foster youth turn 18 each year. MR. NEWMAN answered that it could range from none or 10 a year. VICE CHAIR HUGHES asked what the range of disabilities applicable for this situation is. MR. LEE said the bill is talking about youth eligible for waivers. This means that they have been assessed such that they could receive care in an institution, an intermediate care facility or a skilled nursing facility. These conditions include severe cerebral palsy, short gut syndrome, Down syndrome, and autism. 2:43:40 PM VICE CHAIR HUGHES commented that it would be difficult for them to live independently. She opened public testimony. 2:44:04 PM LOIS EPPERSON, representing self, Wasilla, Alaska, said she has been a foster childcare provider since the 90s for children on waivers. She is licensed as an assisted living home because the girl they have had in their home for 18 years aged out of child foster care. In order to keep her in their home their option was to become an assisted living home. They have taken care of three children on waivers over the last 30 years until they moved out or passed away. These are kids who are severely brain damaged from birth trauma. The person they have now requires complete total care. She cannot roll over on her own. She must be fed and bathed. This is the type of child who would benefit from the bill. When they age out of child foster care, they could just roll over into an adult foster care license with their current licenses and the home and services would not be disrupted. Her young adult is never going to improve and cannot take advantage of other services like transportation. She will always need the same level of care or greater as she ages. MS. EPPERSON said they call themselves foster parents but they are assisted living providers. They provide 24 hour care and the only help is respite. The client has some day hab hours, so she can get in a van and get out of the house. They are paid a stipend by through the agency they work through. They have a care coordinator and act as guardians for her. They must abide by all regulations for an assisted living home designed for a multipatient facility. Adult foster care would make life for the client and the home simpler and easier. VICE CHAIR HUGHES thanked her for her efforts and asked if she worked with Senator Dunleavy on this a few years ago. MS. EPPERSON replied that she was one of three women working on then SB 10. They have been trying to work on this for years. VICE CHAIR HUGHES said she was glad to see the efforts come to fruition. 2:49:23 PM LINDA GIANI, representing self, Wasilla, Alaska, said she has been working on trying to get this legislation passed since 2011. She first started working with a former governor and then Senator Dunleavy and some house representatives. It has been up and down. Governor Dunleavy agreed to continue to pursue this. She had a son who was one of most disabled children in the state of Alaska. He passed away two years ago. She is a care coordinator and works with children on CMS waivers. She has seen a need for this for a long time and is hoping that it will be taken care of. As these children turn 18, the important thing is that they not lose any of their services. They turn 18 and suddenly they have to live in assisted living where the expectation is that they will get better. All the in-home supports are taken away, which is the only service that they need to have. It is exhausting to take care of these children. She did it for 21 years all by herself. The foster parents of these children have to be aware of the children 24/7. The adult foster care license has been needed for many years. She is praying that it goes through this time and it includes personal care services. They lose all that because they turn 18, which doesn't make sense because there is no other change except age. She hopes the new license permits families to get the in-home support services. The waiver services are meaningless unless the in-home support piece is added. There are many families who have been in the system for many years, like Lois Epperson. She has such admiration for them. For 10 years this has been her project. She worked with the governor for years on this. It is time. 2:54:22 PM VICE CHAIR HUGHES thanked her for all she has done for the precious, disabled Alaskans and her decade of persistence. She closed public testimony and held SB 98 in committee. SENATOR BEGICH thanked the members for the robust discussion. That allows them to know what is going on with bills. VICE CHAIR HUGHES said it was informative and about some important matters. SENATOR REINBOLD said these are important and interesting bills. This is why there is Health and Social Services, for when people are truly in need and dependent on people.