Many MaineCare providers and families are left scrambling and concerned after the announcement of a payment cap and a 90-day pause on payments.
In January, Governor Janet Mills submitted a supplemental budget request for the Fiscal Year 2025 of $118 million in General Funds to match projected need for programs like MaineCare. The funding was said to already be available through new revenue recognized through the Revenue Forecasting Committee, a nonpartisan committee. The requested supplemental budget only needed to be approved and passed by the Legislature.
On February 11 and 25, the Legislature failed to decide on the supplemental budget. Without the passing of the budget, the Department of Health and Human Services (DHHS) will not have enough money to pay MaineCare providers in full through the end of the year. In order to deal with this, DHHS has announced that they will be capping payments at a certain amount and withholding payments from some providers. This is set to begin on March 12.
Courtney Pride, the owner of Pride Pediatric Therapy in Wilton, said she received an email from the Office of Mainecare Services informing her of the payment pause. Within the email read:
“Unless the trajectory of legislative action changes, the Department will need to temporarily withhold certain payments from providers starting in March in order to ensure that at least a percentage of claims are paid until the Department receives sufficient funding. The exact date that payments will need to be withheld will be determined in the coming weeks.
“The MaineCare shortfall is driven by the increase in MaineCare enrollment associated with required continuous coverage during the COVID-19 pandemic and eligibility expansions, increasing patient need, return to pre-pandemic utilization, and increased reimbursement to reflect high inflation and long overdue investment to ensure adequate reimbursement for many services.”
Pride expressed how this will negatively affect her business, staff, and patients:
“Without proper funding, providers will have to make hard decisions on accepting MaineCare patients,” said Pride. “For Pride Pediatric Therapy 78% of our patients rely on MaineCare. If MaineCare has funding caps that could potentially hinder my ability to pay my staff, keep our lights on, and overall provide consistent services to the most at-risk population.
“It would be truly heartbreaking needing to make a decision on who can and cannot be seen for services due to funding mishaps. This could result in us needing to prioritize private pay or private insurance patients, which would put the most at risk population at an even greater disadvantage to accessing services.”
Like Pride pointed out, this will largely affect children with disabilities who rely on MaineCare for medical services. Melissa McLeod, the mother of a child with a disability, sent a letter to Maine senators not only to ask for help, but to “beg” them to help save her daughter’s life.
McLeod’s six-year-old daughter Lydia was born with cerebral palsy and relies on Katie Beckett, a MaineCare program for children with significant disabilities that acts as a secondary insurance.
“We have paid our taxes honestly and fully,” McLeod wrote. “We have never relied on the government for any support until Lydia was born. Healthcare for medically fragile children is unbelievably expensive and no regular two-income family can afford the co pays that we receive after our private insurance coverage.
“We are being forsaken by our government. Our child’s life is not valued and she will suffer constantly and immensely if these cuts happen. I don’t know how I will be able to go on watching my child suffer once my family is bankrupt from her medical care.”
Lydia attends multiple occupational therapy appointments a week, takes four daily medications, needs regular medical procedures, and medical equipment like her powerchair that costs upwards of $20,000 on its own. Mainecare helps her family with these costs.
“One thing that I think is a misconception among people who don’t have family with disabilities is that we get everything for ‘free’ which could not be further from the truth,” said McLeod. “For example, we are able to get a wheelchair with insurance support, but we had to figure out how to get a ramp for our home or a vehicle that can transport a wheelchair. We were fortunate that a local agency donated a wheelchair ramp for our house. Currently, we do not have a vehicle to transport Lydia as a $80,000.00 van is not in our budget. I’ll also add that Lydia’s school bills Medicare for her therapies as well as for one on one support personnel. This is one of the only ways that they can afford to have the staff needed to safely support Lydia.”
McLeod expressed how exhausting it is to keep her daughter safe and healthy. Many calls to insurance companies, fighting for coverage and policies. “I can’t even fathom how things will be if we lose Medicare,” she said. “[Fighting for healthcare] is like a second full-time job.”
She also shared that the prices for medical equipment, especially for people with disabilities, are overwhelmingly high. And that many people don’t understand this, potentially leading them to believe they are getting things for free, taking advantage, when the reality is much harsher; insurance doesn’t always make necessary equipment, procedures, or medications entirely affordable.
“What people fail to understand is that one of the reasons you literally cannot afford to have a child with a disability is because of our healthcare system,” said McLeod. “Every. Single. Medical need that my child has costs an obscene amount of money due to the unreal costs of healthcare.
“I think it has been very easy to mislead citizens into believing that somehow people like me are living happily and with excess from leeching off of the government and that is ridiculous. […] There is a lot of lip service from the folks in power that we need to focus on ‘America and Americans first,’ but we are not taking care of our own citizens.”
McLeod said that any hold or disruption could affect how and if Lydia can get her necessary medical care. They would have to make cuts to medication and procedures that protect her quality of life, like dropping medications that prevent her from having painful muscle spasms, for example.
“Children will die,” McLeod wrote to Maine senators. “Not a maybe – they will suffer and die. […] This is preventable. It has to be stopped. Please help my family and others like us. We are terrified and feel completely powerless. My daughter is my entire world. She is beautiful, strong, and amazing. She deserves to live. […] I’m begging you to lead your party away from hurting and killing children through these cuts. Please have compassion. Do not allow innocent children to become a casualty to partisan politics and cruelty at your hands.”
Not just children, McLeod also spoke out for other marginalized Americans who, she believes, deserve the same care that any American does.
“Our most vulnerable—individuals with disabilities, veterans, people experiencing homelessness, the chronically ill, the addicted and mentally ill—are American citizens and the United States should be doing everything in their power to support American citizens,” McLeod said. “Our country is defined by the success and survival of the least among us more so than the privileged. Do we really want to be a country that sits back and watches our fellow Americans suffer and die when it is so easily preventable?”
