By Susan K. Livio I NJ Advance Media for NJ.com After 20 years of working as a consultant and advocate for people with disabilities, Colleen Roche understands she can be the most persuasive by making her case in person. That's why she traveled to the Statehouse in Trenton twice in the last two months, embarking on a three-hour trek in her wheelchair from home in Montclair to the train station about a half-mile away, catching two trains, then traveling another mile up West State Street. For people without disabilities and access to a car, this trip would take half as long. But living with cerebral palsy, Roche accepts that everything requires more time and patience, and the effort usually pays off. But not this time, she said. Roche and other advocates say nearly two years after the passage of a ground-breaking lawtouted to help them "realize their full, professional potential" without jeopardizing their eligibility foressential Medicaid benefits, they are disheartened that the Murphy administration believes theyought to pay a steep price for the privilege of working. They argue that the more they are able to earn, the more they will pay in income taxes - a boon to the state budget. This rule means the state is taxing them twice, they said. Roche and fellow activist Stephen Gruzlovic of Robbinsville traveled to the state capitol in August to deliver a letter to Gov. Phil Muq;ihY..'s office that exRlained their grievances, hoping for an intervention. They also held a Statehouse press conference last month to call attention to the issue, but have received no official recognition or response.
"We have tried repeatedly to share our perspectives, but the response from your
administration has been disingenuous, condescending and downright disrespectful," according to the letter they delivered to Murphy's office. "Essentially, we have been treated likechildren whose parents explain their decisions by saying, 'Because I said so,' thus skirting their responsibility and accountability to implement the law expediently without unnecessary restrictions and fees."
Their most pressing concern is a state Department of Human Services rule requiring people enrolled in the NJ WorkAbility program to pay $165 a month in premiums if they earn more than $74,000 and $989 if their annual earnings exceed $220,000 to stay on Medicaid.
State officials predict the longstanding NJ Workability program, now used by 7,000 people who pay no premiums, will quadruple in enrollment by 2027, with half of all newcomers earning at least $74,000, when premiums kick in, according to Human Services documents.Premiums are needed to offset this level of growth they estimate will cost taxpayers $350 million by 2027, based on past reimbursements.
Advocates who once heralded the new law as a huge step toward enabling people with disabilities earn their worth believe state officials don't understand what it's like to be a disabled working professional. They say they won't use Medicaid to cover doctors' visits, hospital stays or prescription drugs because they will receive better insurance coverage through their jobs. Roche said she needs Medicaid to pay for her wheelchair and other equipment, and for personal assistants, who help people with mobility limitations get out of bed, bathe, dress and prepare meals.
"How much did it cost for you to get out of bed this morning? How much did it cost you to getin the shower this morning? I'm not a mind reader, but I can safely assume that for most people who don't identify as someone with a disability, the answer to that question is zero," said Roche, the chairwoman of the New Jersey Statewide Independent Living Council.
"If the state proceeds to impose a premium on disabled workers throughout the state of NewJersey who are earning a thriving wage over $74,000, they are really taxing our disability.They are charging us money to do those things which you take for granted," Roche said."People with disabilities need access to Medicaid because it is the one and only way that wecan have access to the home and community-based supports that are necessary for us to stay alive."
Medicaid also covers doctor visits, prescriptions and hospital stays, but if a person is gainfully employed, they will opt to use the insurance provided through their job, which is far superior toMedicaid, said Norman Smith, who founded Project Freedom, a housing and social services nonprofit serving people with physical disabilities in central and south Jersey since 1984.
Many medical practices do not accept patients on Medicaid because the reimbursement is so meager, he added.
"What bothers me is their assumptions that higher income people would opt into WorkAbility for health care instead of using private healthcare insurance from our employers," Smith said. "If you have a high-income job, you have access to better quality healthcare insurance. They are ignoring this factor in their calculations."
Human Services spokesman Tom Hester Jr. said state officials have been studying how other states have helped disabled people improve their economic standing while being careful stewards of taxpayer funds and believe they have struck a fair balance.
"Between the depth of our Medicaid benefit package and the breadth of our eligibility, there is no state program we have identified that is more generous than our NJ WorkAbility expansion," Hester said.
"Some Workability members will use Medicaid to cover traditional acute care services, such as hospital stays and doctor visits. Others will use Medicaid to cover ongoing services, such as in-home personal care assistance. Some will use both types of services," Hester said. "In each of these cases, there will be significant costs to the state, which premiums will partially offset."
Higher-income earners required to pay a premium may save money if they are also on Medicare, Hester noted. "Medicaid coverage will eliminate out-of-pocket cost for individuals with Medicare coverage, which can be hundreds of dollars a month at higher-income levels," Hester added. But advocates say people who rely on both government plans are in the minority.
The department began phasing in the new law in April by expanding eligibility to anyone 16
or older, removing any limits on recipients' assets, and by no longer counting spousal income toward eligibility, Hester said. The state budget approved in June includes $36 million to help launch the expanded program, he added.
Only one in five people in the nation with a disability is employed - a grim statistic that does not reflect the reality of how many more are willing and able to join the workforce. Gruzlovic, Smith and Roche both say they have had to pass up promotions and jobs with better wages because earning too much would jeopardize their Medicaid benefits.
With unanimous support and great fanfare, Murphy signed the WorkAbility law in January2022 that promised to end these difficult choices. The new NJ WorkAbility program allowsP.f.Qple to earn a living without income and age limits while continuing to qualify for the expensive services private insurance doesn't cover, like equipment and personal assistants.
But the premiums are a step backwards - for people with disabilities and the state, they argue.
Stephen Gruzlovic, left, Colleen Roche and Norman Smith demonstrate outside the Statehouse in Trenton on Sept. 5 to call attention to the problems with the NJ Workability law.
Nationally, 46 states have laws that have enabled more than 400,000 people with disabilitiesto work and receive Medicaid benefits over the last decade, according to a 2021 report by the Bipartisan Policy Center.
According to a 2022 analysis by the Kaiser Family Foundation, 17 states do not charge premiums. New Jersey would join Illinois as the two states that do not start charging premiums until workers earned more than 250% of the federal poverty level, which is
$73,932 this year.
The federal government does not require states to charge premiums, according to a 2000
U.S. DeRartment of Health and Human Services memo. "You may, if you wish, subsidize payment of premiums...however, any such subsidy must be made solely with State funds. No Federalmatching funds are available for such subsidies," the memo said.
Disability advocacy groups have urged the state to set aside premiums, arguing the collection process would be cumbersome and the cost a deterrent. They include Disability Rights New Jersey, a federally-created advocacy group for people with developmentaldisabilities and mental illness, the Ombudsman for Individuals with Intellectual or Developmental Disabilities and Their Families, as well as Sen. Anthony Bucco, R-Morris, one of the prime sponsors of the legislation.
"New Jersey has one of lowest Medicaid reimbursement rates in the country, making a state fee unnecessary," Bucco wrote in a Sept. 1 letter to Human Services Commissioner Sarah Adelman. "Enabling more residents to work with no limitation on income will allow the state to collect more in income tax. With tax revenues already exceeding $11billion, there is absolutely no reason to insist on a fee."
Bucco also questioned the fairness of basing the premiums on the federal poverty level, a measure that treats everyone the same, regardless of whether they live.
"New Jersey's very high cost of living means that this impacts our state's residents unfairly,'' he wrote. "People with disabilities already deal with extra costs of living. Those that work often do so part-time or seasonally, meaning those that work often do not have consistent month-to-month incomes. Imposing premiums is as burdensome to these residents as it is unnecessary."
Hester stressed NJ Workability "is a voluntary program - and no individual will be required to participate if they do not need or do not want access to Medicaid benefits." The state's take-it-or-leave-it attitude is hurtful, Smith said.
"It's obvious to me that New Jersey Medicaid administration doesn't understand the lives of
actual working people with disabilities who need a support system, and they are perpetuatingthis image of Medicaid recipients cheating the system by being on Medicaid," he said.
