The demand for direct care workers, or DCWs, will increase substantially in coming years as the population of older adults and people with disabilities in Iowa increases. DCWs go by different names often determined by where they work and the populations they support or serve. Regardless of their title they provide most of the hands-on care in settings that range from in-home care, assisted living, nursing homes, and hospitals to residential care facilities, supported living, adult day services, and hospices.

Our state has struggled mightily to maintain an adequate direct care workforce. This is a challenge that we share with every state in the country, but an especially vexing problem in Iowa due to our slow population growth, and the increasing number of people needing direct care services further compounded by the pandemic. In fact, 59.2% of Iowa’s nursing homes report they are short-staffed, according to a February AARP Nursing Home COVID-19 Dashboard. Attracting and retaining DCWs to meet Iowa’s present and future needs is impossible with the wages currently paid. DCWs’ median hourly wage is below $15 an hour with 15% living below the poverty guidelines according to PHI National. Twenty-eight percent work more than one job to make ends meet. Caring for and supporting other human beings is a wonderful calling but should not require people to take a vow of poverty to do so.

The American Rescue Plan Act (ARPA), federal legislation passed in 2021, brought large sums of one-time funding into Iowa. A portion of the funds are being used to provide bonuses for direct support professionals (DSPs) who serve individuals with disabilities in some settings. While temporary bonuses help DSPs and their employers, it isn’t a solution and falls short of what is needed. Needed, is a more equitable distribution of wage enhancements across settings and populations served to shore up the direct care workforce. Iowa lawmakers should seize this golden opportunity (pun intended) to use ARPA funds to jump-start the following and commit to their future sustainability:

Paramedic Shannon Williams has become something like family to 80-year-old Grand Haven resident Leslie Toth.

Over the past few years, Williams and a team of paramedics and nurses have steered Toth through a bout with COVID-19, urinary tract infections, fever and falling blood pressure, kidney stones and a case of pneumonia that could have landed him in the hospital.

“I don’t know where I’d be without it,” Toth said of the paramedic team as Williams stopped by his home to check his vitals one afternoon earlier this month. 

Williams is part of a Grand Rapids-based health management program built around paramedics, nurses and social workers called Tandem365. The mission is to offer support in the homes of more vulnerable residents, most of them elderly and all of them more susceptible to serious illness and frequent hospitalizations.

The result: Far fewer of the team’s patients wind up in hospital emergency rooms than a comparable group of residents who lack such support.

The nonprofits that run adult group homes were supposed to receive a boost in state funding in January to increase pay for their workers. But the payments approved by the Legislature in 2021 never arrived, leading some homes to close their doors.

The Mills administration and Legislature are working to fix the problem – caused by an apparent oversight during the legislative process last year. In the meantime, the delay is causing disruptions in a financially fragile network of homes that serve some of the most vulnerable members of society, and in the lives of the residents who have been forced to leave.

“It’s not fair. I have to move out of a place I’ve been living in for seven years. I love where I live,” said Scott Wilson, 32, of Auburn, who has intellectual disabilities.

Wilson is moving from one group home in Auburn to another, although the new placement has not been finalized. The agency that provides the service, John F. Murphy Homes in Lewiston, had to close two group homes this year for financial reasons.

The Legislature and the Mills administration are working to fix the funding mistake. The crux of the problem is that the Legislature approved the reimbursement rate increase to set the wages of direct care workers at 125 percent of minimum wage, but didn’t fully fund the increases in the state’s budget.

The bad news is that our state is facing a crisis: Delaware citizens with intellectual and

developmental disabilities (I/DD) are not getting the care that they need.

The good news is that we have the money and the mechanism to solve this crisis.

In 2019 Delaware’s General Assembly passed, and Governor Carney signed into law, the McNesby act. The idea behind the McNesby Act is simple and it is profound: As a state, we should provide funding to ensure that the most vulnerable among us, those living with I/DD, can lead lives of dignity.

The most meaningful way we can help people with disabilities to live their best lives is to significantly increase the funding for Direct Support Professionals (DSPs). DSPs are essential to full and inclusive lives for people with disabilities. They work inside the home on the most basic needs of daily life that are impossible for many to do by themselves: getting dressed, eating food, and using the bathroom. Equally important, they work outside the home to facilitate community participation, serve as job coaches to enable people with I/DD to work meaningful jobs, and foster inclusive lives for those in their care.

By not allocating all the funding authorized by the McNesby Act, we have failed to build upon the promising first step of its passage. Because of this failure, service providers, including Autism Delaware and others, cannot afford to pay DSPs a living wage. The low wages and demanding work has driven many DSPs away from a profession that they love and the people who need them. DSP vacancies are at an all-time high and the lack of care is having a devastating impact on Delawareans with disabilities and their families.

The time is long past due to invest in the caregiving workforce — paying them a professional, family-sustaining wage for their physically and emotionally demanding work. This is the best way to ensure that people with I/DD get the services they so desperately need. DSPs not only care for those with I/DD, they allow for their family members to work, to care for other children, and to live a full life.

It bears repeating that we are at a crisis point and we have a choice to make. One choice is the status quo: continue to pay DSPs a non-living wage while allowing the standard of care for those with IDD to slip. The other is to fully fund the McNesby Act, to pay caregivers a living wage, and ensure that the most vulnerable among us get the care they deserve. If we choose to fund the McNesby Act by making a $16.5 million investment, Delaware is guaranteed $21 million in matching federal funds according to figures presented by the Division of Developmental Disabilities Services during the public hearing on the state budget. If we choose not to, the crisis will only get worse and the federal matching funds disappear.

Our state has the money to fully fund this program. Our budget surplus makes that clear. What is not yet clear is whether we have the moral conviction and political will to ensure that our most vulnerable citizens receive the care that they need. We believe that the General Assembly will show that conviction and they will fully fund the McNesby Act. For people like Lorraine, for families like ours, and for the DSPs who help us make it through the day, it is imperative that they do.

A courtroom can be an intimidating and scary place regardless of what you are there for, and for people with developmental disabilities, it can add another layer of distress.

A few years ago, Akron Municipal Court Judge Ron Cable started RISE Court to help human trafficking survivors caught up in the criminal justice system.

Now, he’s created the “Connect” program, focused on individuals with developmental disabilities.

“I think it's unique in that it serves a very vulnerable group of people,” Cable said.

According to the court, there are roughly 40 to 50 people with developmental disabilities charged with misdemeanor crimes in Summit County each year — like 22-year-old James Stohler, who is set to graduate from Connect in just a few weeks.

“I’ve had a couple anger issues in the past,” James explained. But now, he says having people surrounding him who care and look out for him has made all the difference. “It’s kind of like having a family around you,” added James.

The Whitemoor facility in Belper is one of eight centres proposed for closure by Derbyshire County Council.

More than 2,000 people have so far signed a petition against closing Whitemoor.

The county council said the eight centres were under used and shutting them would free up cash to redesign the service.

Francine and Ashley Franklin are full-time carers for their 38-year-old daughter Claire, who has Down's syndrome and autism, and has attended Whitemoor in John O'Gaunt's Way for 15 years.

"She's a creature of routine and to be torn away from a place like Whitemoor, which she regards as her second home almost, would be a terrible wrench for her," said Mr Franklin. "I don't think she would be able to cope."

"She's not got any siblings living at home with her anymore. So she is very much an isolated character at home. When she goes to Whitemoor she's totally different."

The couple said the council's claim that use of the service was dwindling was "rubbish".

"There are a lot of people like Claire. Not everybody can live independently," said Mrs Franklin.

"The aspiration is wonderful, but she can't. So we need to have something in place. There are lots and lots of people out there who want that service, and they've been denied. These are people with no voice. They are individuals who need to be looked after."