Latest news with #iBudget
CBS News
16-05-2025
- Health
- CBS News
Florida families of children with developmental disabilities stuck in line for assistance
Despite a state budget that allocates more than $900 million this year to support people with developmental disabilities, tens of thousands of Florida families are still waiting for help. Among them is the Castro family of Sunrise, who said the long-standing waitlist for services is forcing them to pay thousands out of pocket each month to care for their daughter with a rare genetic condition. A rare diagnosis, a daily struggle Fridays are always busy in the Castro home. That's when 5-year-old Madi attends physical therapy and dynamic movement intervention-treatments her parents say are essential but costly. "She has a chromosome 7 duplication. It's essentially a one-in-a-million. It's very, very rare," said Madi's mother, Francis Castro. "We don't have a lot of information as to what that means. It comes with other things, of course, like being nonverbal, [and having an] intellectual disability." While therapy has made a huge difference in Madi's development, it's all paid for out of pocket. "Her overall care a month, including everything else that we do, is probably about $3,500," Francis said. Thousands still waiting for help The Castros are one of more than 23,000 families in Florida stuck on the waitlist for the state's iBudget Medicaid Waiver program, which provides essential services such as therapy and in-home care for individuals with developmental disabilities. "Some people with a diagnosis of cerebral palsy or severe autism, other chromosomal or genetic mutations, they have been on the waitlist 7, 12, 15 years with absolutely no other assistance," Francis said. "So essentially, they have to quit their jobs and just take care of them." Although Florida invested a record $2.2 billion into the Agency for Persons with Disabilities last year, only about $64 million went toward reducing the waitlist-enough to serve just 1.71 percent of those in need, according to the Florida Policy Institute. "Anyone can become disabled at any point," Francis added. "So I think it's something that everyone should be passionate about because once you need the services, it becomes a lot harder to try to get them, and it really shouldn't be." Other states, including New York, Vermont, and New Hampshire, have eliminated their waitlists altogether. "It is really frustrating having to continuously fight," Francis said. "But obviously it's worth it for our kids." CBS News Miami reached out to the Agency for Persons with Disabilities for comment but has not received a response.
Yahoo
09-05-2025
- Health
- Yahoo
All eyes on Florida's new statewide Medicaid managed-care bill
The Florida Capitol building on Aug. 12, 2024. (Photo by Jay Waagmeester/Florida Phoenix) Some of Florida's most vulnerable people who rely on Medicaid may wind up having their care flow through managed care organizations under a bill the Legislature passed this session. Advocates for people with intellectual disabilities are willing to make this move because the proposal, HB 1103, also makes changes to how the Agency for Persons with Disabilities (APD) operates, requiring, among other things, for it to be more transparent about the billion-dollar Medicaid iBudget program it administers. Now there are fears the bill won't become law because the Legislature heavily recast the original agency bill. For example, it provides for a no-bid statewide expansion of a Medicaid pilot program, imposes transparency requirements on the administration of Gov. Ron DeSantis, and is a priority for House Speaker Daniel Perez, who has been rowing with the governor. 'Everyone is worried he's going to veto it,' Alan Abramowitz, executive director of the social services agency The Arc of Florida, told the Florida Phoenix in a telephone interview. The legislation involves a Medicaid managed-care pilot program launched at the behest of then-House Speaker-Designate, now Speaker, Daniel Perez in 2023. The pilot was designed to care for up to 600 individuals with intellectual and developmental disabilities, and was approved for Medicaid regions D and I, which serve Hillsborough, Polk, Manatee, Hardee, Highlands, Miami-Dade, and Monroe counties. The state received federal approval for the pilot in February 2024. The Agency for Health Care Administration issued a competitive procurement for the pilot with two vendors, Florida Community Care and Simply Healthcare Plans Inc., vying for the contract. AHCA eventually awarded the contract to Florida Community Care. Three hundred and fifty eight people were enrolled in the pilot program as of May 5. During testimony in a House Health and Human Services Committee in February, Carol Gormley, vice president for government affairs for Independent Living Systems, attributed the slow start-up to administrative barriers on APD's part. Independent Living Systems is the parent company of Florida Community Care. HB 1103 would lift the 600-person cap on the pilot program on Oct. 1, expanding enrollment statewide for qualifying disabled people on the Medicaid iBudget wait list. There are 21,000 plus people on the waitlist, according to a legislative analysis. iBudget provides clients with money to choose services to help with activities of daily living such as eating and bathing. Those home- and community-based services allow clients to live in their communities and outside of institutions. APD serves 35,790 individuals through iBudget Florida. Under the bill, in July 2026 the program would open to every Medicaid-eligible intellectually disabled person, including those already enrolled in the iBudget program and a different Medicaid managed-care program known as the Statewide Medicaid Managed Care (SMMC) long-term care program. Some observers feel the statewide expansion may be premature, though. Valerie Breen, executive director of the Florida Developmental Disabilities Council, told the Florida Phoenix that there hasn't been enough experience with the pilot program to take it statewide. '[The] council believes there should be more data before it goes statewide. In addition, we believe that people should have the ability to choose their long-term support and services,' Breen said. Senate bill sponsor Sen. Jennifer Bradley tagged two amendments onto HB 1103 late in the session that ensured Florida Community Care will continue to be the only contracted managed-care plan for the intellectual disabled for the next six years. The Arc of Florida doesn't oppose statewide expansion of the pilot program because enrollment in it isn't mandatory, Abramowitz said. Indeed, Abramowitz lauded HB 1103 because it makes it clear that intellectually disabled clients or their guardians must affirmatively agree to be placed into a managed-care plan and cannot be mandatorily assigned into one. The affirmation applies to the intellectually disabled program and the Medicaid managed-care program. While most Medicaid beneficiaries in Florida are required to enroll in that managed-care program, people with intellectual disabilities are not. Nevertheless, the AHCA has been assigning Medicaid-eligible intellectually disabled people into the managed-care program unless they tell the state they don't want to be enrolled. Again, Florida Medicaid statutes don't authorize AHCA to randomly assign people, but the DeSantis administration has done it nonetheless, including through mandatory assignment language in the last managed-care contract. AHCA was rolling out the managed-care policy change while APD was announcing the new intellectually disabled managed care pilot program. 'It confused everyone. It was a mess. People were unhappy,' Abramowitz said. HB 1103 quickly went from a priority bill for APD to a priority bill for House leadership and advocates. The bill was filed in February when Taylor Hatch still headed the agency (she now heads the Department of Children and Families.) As initially filed, the bill would have increased the size and power of the APD and made it the single state agency to serve Florida residents with disabilities. To that end, an early version of the bill would have transferred the Division of Vocational Rehabilitation, the Division of Blind Services, and the Federal Rehabilitation Trust Fund from the Department of Education and placed them within APD. It also would have changed the title of the person who runs the agency from 'executive director' to secretary. None of that is in the final bill, though. That's because the House Human Services Subcommittee tagged a lengthy amendment onto the measure, replacing the agency's wish list with the House leadership's instead. The amended bill would create a statewide advisory council to make recommendations to the APD. The idea that information about the number of people served at the expense of the service being accessed, those on the waiting list, those sorts of things, once again being available online is certainly going to be a positive. – Former APD Executive Director, advocate, and lobbyist Jim DeBeaugrine It also would require ADP to post its quarterly reports on its website regarding Medicaid iBudget and its operations, including the numbers of clients and of people on the iBudget wait list. APD routinely posted the information on its website for years but in the last two years under the DeSantis administration has stopped making the information — which the agency is required to submit to the Legislature — publicly available. Former APD Executive Director Jim DeBeaugrine lauded the transparency requirements for the iBudget reports. 'The idea that information about the number of people served at the expense of the service being accessed, those on the waiting list, those sorts of things, once again being available online is certainly going to be a positive,' DeBeaugrine said. Abramowitz said the transparency requirements, along with creation of a Statewide Family Council, represent important changes for people with intellectually disabled family members. The Statewide Family Council would advise APD on policy, working alongside the existing local Family Care councils. These councils have for the last 31 years worked with families of people with disabilities, sharing information about programs, services, and resources available in Florida. The bill would require APD to publish on its website all local family care council reports plus local council findings, policy recommendations, and an assessment of the agency's actions in response to previous recommendations of the local councils. Lastly, the bill would require APD to contract for a study to review, evaluate, and identify recommendations regarding the algorithm used to set a person's iBudget allocation. The study must, at a minimum, assess the performance of the existing algorithm used by the agency and determine whether a different algorithm would better meet clients' needs. Abramowitz said a lot of the bill was 'grassroots written' and that there's been a surge of support for it in the community. Stephanie Nordin is a mother of four, including twins with severe autism, who wrote a letter to DeSantis beseeching him to sign the bill. 'Like so many parents across Florida, I live with the constant weight of trying to secure support for my children in a system that feels impossible to navigate. This bill would bring meaningful, desperately needed change to families like mine,' she wrote. 'And just as importantly, this bill creates real transparency. For the first time, agencies will be required to publish updates about waitlists and funding, so families aren't left in the dark wondering where they stand.' Abramowitz, too, wrote a letter to the governor asking that he sign the bill into law. 'Our families, self-advocates, and providers would be honored to celebrate this moment alongside you and your staff. I hope you will consider holding a bill signing ceremony. We would be there in force to celebrate with you. . I would be happy to help coordinate and bring families to the event,' Abramowitz wrote. SUPPORT: YOU MAKE OUR WORK POSSIBLE
Yahoo
12-03-2025
- Health
- Yahoo
Optimism high in Capitol for advancement of developmental disability assistance
Sen. Carlos Guillermo Smith (podium) and Rep. Rita Harris (right of the podium) say now is the time for a Medicaid buy-in for people with intellectual and developmental disabilities. (Photo by Christine Sexton/Florida Phoenix) Hopes are high in Tallahassee for the Legislature to advance the cause of people with intellectual and developmental disabilities a number of important ways. State Sen. Carlos Guillermo Smith and Rep. Rita Harris during a press conference Wednesday touted legislation (SB 1686/HB 1373) that would create a Medicaid buy-in program for working individuals with disabilities — a move they say would go a long way in helping them work while continuing to qualify for Medicaid, a safety net program for the poor, elderly, and disabled. 'When people can work and earn more, they spend more,' Harris said adding, 'This bill means more self-sufficiency.' Smith added: 'People with disabilities, they too often have to choose. They have to choose between earning a living or having the essential services that they need. This is a serious barrier to economic self-sufficiency, and it discourages work for people with disabilities.' Also attending the press conference was Maria Sutter, an architect who was living in New York City when a bicycle accident left her with a spinal cord injury. 'At the time of my accident, I really thought I was living my absolute best life,' she said. Sutter, 48, said she moved to Ohio following her accident and rehabilitation. There, she was able to tap into a Medicaid buy-in program that allowed her to work without losing her Medicaid coverage while paying premiums. But she lost that opportunity when she moved to Florida. 'This really is a smart fiscally responsible strategy. It's not a handout. It's going to empower me to be able to work and live independently so I can continue to receive my own community-based services, which lets me have things like my own caregivers, and they really meet my needs,' she said. Smith and Harris are both Democrats, but House Speaker Daniel Perez, a Republican from Miami, has shown an interest in developmental disability issues, in part because his brother has autism. In addition to pushing the Medicaid legislation, Smith said the Legislature should also pass SB 412, the 'Motorized Wheelchair Right to Repair Act,' which requires wheelchair equipment manufacturers to make available any documentation, parts, and tools required for the diagnosis, maintenance, or repair of the devices. A Harvard public health study shows wheelchair users experienced severe consequences from wheelchair breakdown, with 27% stranded at home, 12% stuck in bed, and 9% stranded outside their home from anywhere from two to 17 days. Smith also urged passage of SB 862 which would require the state's top economists to consider the number of people with developmental disabilities who qualify for the 'iBudget,' and projected future need for the program as they prepare their estimates. iBudget is an optional Medicaid waiver program that allows people with developmental and intellectual disabilities to access home and community-based services that are not normally part of a traditional Medicaid program, but that help them with their activities of daily living. By accessing assistance with feeding and bathing they are able to avoid being institutionalized, which costs more than providing the home and community based services. The state's iBudget program is not now part of the state's regular Social Services Estimating Conference review, which means state economists don't project the need or costs for the program as they do with other Medicaid programs. iBudget is an optional Medicaid waiver program that allows people with developmental and intellectual disabilities to access home and community-based services that are not normally part of a traditional Medicaid program, but that help them with their activities of daily living. By accessing assistane with feeding and bathing they are able to avoid being institutionalized, which costs more than providing the home and community based services. SUPPORT: YOU MAKE OUR WORK POSSIBLE
