- May 15-17, 2019, Council Meeting, Doubletree Hotel, Tallahassee, FL
- June 7-9, 2019, Family Café, Hyatt Regency, Orlando, FL- The Annual Family Cafe is the nation's largest cross-disability event. Last year's 20th Anniversary Family Cafe attracted some 11,840 participants. They had the opportunity to choose from 220+ classroom size breakout sessions that addressed a wide variety of disability-related topics.
Tallahassee, FL – Amid talk during this year’s legislative session of making the Medicaid program more restrictive, lawmakers are poised to allow working adults with disabilities to earn more money and maintain their Medicaid benefits.
As part of a budget agreement, the House and Senate would allow adults with disabilities to earn $50,886 annually and not lose access to their Medicaid benefits.
The agreement also would allow working adults with disabilities to have up to $13,000 in cash in savings accounts without risking the loss of their Medicaid “home and community based” benefits, including services to help with activities of daily living.
“I was wondering if this day would ever come,” said Jim DeBeaugrine, a former director of the state Agency for Persons with Disabilities who now is a lobbyist.
Under current rules, a working adult with disabilities tapping into home- and community-based services cannot earn more than $27,000 a year or have more than $2,000 in cash savings.
Though they may be able to obtain traditional health-insurance benefits through employers, DeBeaugrine said many people cannot survive without the home- and community-based Medicaid services to assist with activities such as dressing and bathing.
As a result, DeBeaugrine said, many people will quit jobs or cut back on hours so they don’t lose Medicaid benefits.
Instrumental in helping to establish the program was 27-year old Sarah Goldman, who has cerebral palsy and works as an aide to Rep. Ben Diamond, D-St. Petersburg, in his district office.
In an interview with The News Service of Florida, Goldman recalled graduating from Florida State University with her master’s degree in 2015 when her Medicaid case manager first told her about the income restrictions.
The case manager’s advice to Goldman was to get a part-time job and apply for subsidized housing.
“I left that conversation and I was crying because I was just so frustrated,” she said. “How could I have come this far to basically be told, ‘Why would you work?’”
Irked, she began researching Medicaid income limits for people with disabilities who want to work in Florida and nationally. She quickly learned that Florida was one of four states that had not requested to increase the income limit for working adults. Such increases require federal approval.
Goldman in 2016 pitched her idea of expanding the income limits at an annual legislative meeting of the Florida Developmental Disabilities Council. She also applied for an unpaid internship at the Legislature.
Following the 2016 session, she interviewed with former Rep. Kathleen Peters, R-Treasure Island, for a full-time post.
“I told her we need to talk about salary because this is my cap and if I incur anything over this, then I am going to lose my services,” Goldman recalled telling Peters. “I could tell by (Peters’) facial expression, she was horrified. And she told me then if we worked together, she would help me fix this.”
Goldman’s full-time state job enables her to tap into the state employees’ health insurance plan. While it’s considered to be a generous health plan, Goldman noted it doesn’t cover personal-care services she requires, such as bathing and dressing.
“All I am authorized with under my insurance program is 30 shower visits a year. Can you imagine only showering like twice a month?” Goldman said.
But before the Legislature would consider a higher income threshold, it required an analysis to ensure that the move wouldn’t expand Medicaid rolls.
After an unsuccessful effort to pass the study language in 2017, money for the analysis was included in last year’s budget.
The move to allow adults with disabilities to earn more and maintain Medicaid benefits comes as lawmakers this year have considered other proposals to tighten restrictions on Medicaid enrollment and benefits.
The House, for example, passed a bill (HB 955) that would require an estimated 500,000 Medicaid beneficiaries to work or show they are trying to get jobs to keep their health-care benefits. The proposal would exclude seniors and would mostly impact young women with children. The Senate has not taken up the issue.
Valerie Breen, executive director of the Florida Developmental Disabilities Council said increasing the income threshold was one of her association’s top goals for the session.
The council is “extremely pleased that the Legislature adopted one of our top priorities to ensure that individuals receiving Medicaid paid supports can remain employed and not lose the care benefits that help them get to and sustain work on a daily basis,” Breen said in a statement to the News Service.
While the new budget hasn’t been finalized, the agreement opens opportunities for Goldman.
“It means I can move up in my career,” she said. “I one day want to work for a lobbyist or an agency that runs in the Legislature. And those jobs are much higher paying than what I was currently able to earn. So this gives me a peace of mind knowing I can reach the dreams I wanted to while still being able to get out of bed in the morning and get dressed and get ready to go to work. Before, it was basically asking somebody: ‘Do you want to get out of bed or do you want to go to work?’ I don’t think somebody should have to make that choice.”
Six months after Hurricane Michael, a housing crisis for survivors with disabilities
Nada Hassanein, Tallahassee Democrat Published 7:00 a.m. ET April 10, 2019 | Updated 7:06 a.m. ET April 10, 2019
Amanda Baker, pictured March 5, is a Panama City resident who recently moved into an apartment in Tallahassee. She says finding a new home that accommodated her special needs through FEMA was a process that required hundreds of hours of negotiation.
When Hurricane Michael raged through Amanda Baker’s Panama City neighborhood six months ago today, the nightmare was just beginning.
Baker lives with cerebral palsy and uses a wheelchair to move.
The storm’s torrential rain poured through her bedroom ceiling, left mold inside the walls of her duplex and toppled a palm tree in front of her door.
After surviving the hurricane, she spent most of her time in bed to avoid running down the battery of her electric wheelchair. Her caretakers couldn’t get to her.
She had no cell signal, no electricity. She worried about friends and family; they wondered if she was alive.
With no working shower or air conditioner, Baker, who has a skin condition, developed a staph infection in the 101-degree, humid house which was not in a mandatory evacuation area — but she would have to move anyway.
Baker’s home has since been gutted, deemed uninhabitable. The 38-year-old now lives in a senior living facility in Tallahassee — the only accessible affordable housing unit she could find in the capital city.
Baker’s story is not unique.
Already in Florida, affordable housing that’s accessible for people with disabilities is hard to come by. After Michael, the need is gaping.
“The pool to choose from to relocate people is small,” said Carol Stachursky, team operations manager at Disability Rights Florida, a Tallahassee-based statewide advocacy group.
“I think that needs to become part of the planning both at the federal and the state level – that we know when we have a hurricane, or another emergency happens, that they plan accordingly,” she said. “I’m not quite sure they do that adequately.”
Baker agrees. For almost two decades, she’s worked to advocate for people with disabilities and is a member of the Florida Developmental Disabilities Council. She is familiar with how to navigate government aid.
Still, post-Hurricane Michael, she and her executive director, Valerie Breen, say they spent more than 1,000 hours negotiating and communicating with different federal agencies to get Baker relocated.
“I’ve been on the council for three years, but I’ve been doing work with the council for 15 years. So, I’m well-versed in the law, I’m well-versed in what my rights are, I know how these systems work — and I still couldn’t make it happen (alone),” Baker said.
After an exhaustive saga of finding a hotel that accepted FEMA money and was also wheelchair-accessible, Baker received an email from the agency that her home was inhabitable — even with mold in the walls — and that FEMA would grant her only 11 more days of lodging. After that, she’d be responsible for her hotel bills.
For this specific population, FEMA has no particular case manager who guides people with disabilities through the system. This leaves a portion of the population vulnerable.
Director of FEMA’s Disabilities Integration and Coordination office Linda Mastandrea says the agency deploys “advisers” to train FEMA disaster assistance teams in impacted areas on helping disaster survivors with disabilities. But these advisers don’t work directly with survivors.
Aside from FEMA, there are other agencies people with disabilities may need to contact to get help, such as Housing Authority offices to transfer Section 8 vouchers, and Social Security offices for disability income.
There needs to be “a person who thinks ahead for the other person while they're in trauma,” Breen said.
Baker’s parents live in Marianna and were overwhelmed with their own recovery in the town Michael’s eye tore through.
“I would like to see a system of care," Breen said. "The burden on a family is so great— they don't know any of the resources. You need a resource coordinator, a case manager, a care coordinator."
FEMA's Mastandrea says the process is the same for everyone to get help after a disaster, and relief makes room for people with additional needs. She pointed to multiple ways people can register for help.
The problem lies not with the availability of resources, but rather with the standardization of a process that’s more complex to fully help people with those needs.
Out-of-pocket costs totaled more than $5,000 for Baker’s move from Panama City to a hotel, and finally, an apartment. That excluded the nearly $18,000 hotel bill FEMA covered — as well as the hundreds of hours spent communicating with federal agencies.
It took about two months to transfer Baker’s Section 8 voucher to Tallahassee from the Panama City Housing Authority’s damaged office. Not to mention, Baker had to retrieve her birth certificate and other documents “that you’re not thinking (of) when you’re fleeing your house,” she said.
“It’s crazy," she said. "Without a team of people behind you, it’s impossible."
Together, Breen and Baker had to “build a case” for Baker to receive aid and prove she needed medical support. By chance, Breen came into contact with one of FEMA’s disability advisers at a conference of disability councils in California in November.
“If I didn’t have (him) with FEMA to do that, I would have never had a clue to do that and what all we had to gather,” Breen said.
Baker’s story seems to be resolving toward a happy new beginning in Tallahassee, but it is one she knows not everyone like her shares.
“I still have survivor’s guilt because I’m really active in advocacy in my community, and I know that there’s other people that are probably still in a very compromised living situation,” she said. “And just because I happen to know people, I got what I needed. But what about everyone else?”
Reach Nada Hassanein at email@example.com or on Twitter @nhassanein_.