INDIANAPOLIS—In a little more than 60 days families who care for their medically complex kids through the attendant care program will no longer be paid to do so.
It’s a story WRTV has been covering since FSSA announced cutsto the attendant care program earlier this year.
Right now, families are able to care for their children with severe medical complexities though the aged and disabled waiver. Through that waiver attendant care participants get paid an hourly rate to care for their kids.
Come July 1st those families will be required to transition to the health and wellness waiver, where they will be part of the structured family care program. That program will give parents a daily rate rather than hourly, severely decreasing the amount of pay they are receiving.
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The families that met with Governor Holcomb on Monday are trying to prepare for the transition. They have been asking for a meeting with the governor since the announcement was made. However, they say they couldn’t get one until they staged a rally outside of a bill signing Governor Holcomb held for the happy hour bill.
During their meeting they gave the governor and the secretary of FSSA, Dr. Daniel Rusyniak, several pages of information about how the transition will impact families.
"I feel like we gave the governor and the secretary a significant amount of information that they need to be able to move forward with and hopefully be able to act on for the betterment of all our families,” Jennifer Dewitt, an attendant care provider who attended the meeting said.
Dewitt was one of six moms who will have to transition to the structured family care program. They surveyed 250 families that will have to go through the transition come July.
They asked those families if they have been given a tier as to how much their daily rate will be. Majority of them said they have had very little communication with FSSA on their transition.
They also survey 51 case managers. 21 replied saying they haven’t been given guidelines to follow as to what tier families are supposed to be and how they will be paid.
"I don't really know where we are going yet,” Christa Dooley, who cares for her son Jacob said. “I know that I am going to need to switch, but like they were talking about in the meeting, there has just been no communication on how that's going to work. So, I am just kind of in a point of waiting to hear how the process will go."
Dooley says her son Jacob has cerebral palsy, is nonverbal and has a permanent feeding tube. She says not knowing what the future holds is frustrating.
"The girls had so much information to share with them and I just hope that they heard it and are going to actually work to making some changes,” Dooley said.
Dooley is talking about the women who spoke with state leaders. They formed Indiana Families United for Care. The organization was formed when the initial cuts were announced.
During their meeting with FSSA and the governor. They shared a list of changes they want to see to make sure families will be able to transition successfully. You can see that list below.
- Cease holding Notice of Action (NOA) approvals hostage for other waiver services as a way to force Attendant care hours down prior to July 1. For ex: home modifications, specialized equipment and generators;
- Provide families with the evaluation tool that FSSA has instructed case managers (CMs) to use when evaluating for SFC tiers. In the case this tool has not been released, provide a date when that is expected and does the recommended tool consider the medical complexity of the patient outside of just the activities of daily living (ADL) and instrumental activities of daily living (AIDL) factors;
- Appoint a designated Ombudsman to assist with ATTC/SFC related transition issues and have said Ombudsman’s contact information posted publicly on the Medicaid Strategies webpage;
- Embargo the requirement for personal assistance (PA) hours until July 1, 2024 due to lack of communication and notification BY FSSA to members, CM’s and providers to allow for all parties to work through the process of getting these in place. Home Care Agencies are informing us that this is a six to ten week process to get these written, approved and staffed.
- Implement a 90-day delay on implementation in order to provide clarity to families, CMs and SFC providers concerning the SFC evaluation process, final approval for the more than 300 new SFC provider applicants and allow families the time to interview agencies for appropriateness.
- Post an FAQ with responses based on the questions that families ask on interactive webinars to be accessible on the Medicaid Strategies webpage when waiver services are denied, proper written notification be provided for families within five business days of notifying the case manager.
- To, when waiver services are denied, proper written notification be provided for families within five business days of notifying the case manager.
- Publicly post the version of the Health and Wellness, Traumatic Brain Injury, and Pathways waivers that were submitted to CMS for approval.
- Allow respite nursing service for families choosing SFC that FSSA reconsider allowing access to ATTC with an appropriate evaluation tool, guidelines, guardrails, and a limit on LRI provided hours.
Each of the woman are college educated. Between them they have ten degrees. Each of them gave up their career to care for their children full time because they weren’t able to find a nurse or medical professional to provide the full time care their medically complex kids need. They hope this will bring answers to the hundreds of families that are impacted by this decision made by FSSA.
"We have 9 steps to try and get through between now and July 1st and right now all of that is at a standstill because we don't have the tools that we need,” Dewitt said. “Quite frankly there is not effective communication coming out of FSSA."
The FSSA and governor say they will respond to the requests by Friday. The governor sent the following statement in regard to the meeting:
“I listened carefully and appreciated the moms bringing their concerns forward. They obviously only want the best for their children. Dr. Rusyniak was with me during the meeting, and we’ll consider the issues they raised as well as changes we can make to better communicate with impacted families.”
