Personal care budget shortfalls force some to sleep in wheelchairs, advocacy group warns

Rising healthcare costs and stagnant budget allowances are making it increasingly difficult for people who rely on a personal care budget (PGB) to find and retain care workers, according to advocacy group Per Saldo. The mismatch between PGB rates and real care costs has left some care users in crisis situations, with individuals at times forced to sleep in their wheelchairs due to lack of assistance, according to De Telegraaf.

Aline Molenaar, director of Per Saldo, told De Telegraaf that more members are reporting they can no longer maintain their teams of care providers. “Many of our members are telling us that they can't put their care teams together anymore,” Molenaar said. “Care professionals are saying, ‘Hey, I’ve been with you for five years on the same wage. I can earn much more at a care organization.’ They often feel ‘terrible’ about it, but groceries are getting more expensive too. For people with a PGB who need a team of care providers, this is very hard — they depend on care.”

According to Molenaar, the situation sometimes leads to extreme outcomes. “We even see people saying, ‘Then I just won’t go to bed for two nights a week, I’ll stay in my wheelchair,’” she said.

There are about 135,000 people in the Netherlands using a PGB for services like personal care, nursing, or housekeeping. PGBs allow individuals to organize care themselves instead of relying on standard in-kind home care. Depending on the type of care, a PGB is requested from the municipality, the health insurer, or the regional care office. An official care assessment is required in every case.

Corina Heijstek, 58, is one of many struggling to fill care team gaps. She requires nearly round-the-clock care due to permanent health issues stemming from a botched surgical procedure after pregnancy-related complications. “During my third pregnancy, I developed severe pelvic instability. After that, I had an experimental surgery and it went wrong. I’ve been unable to walk since,” Heijstek told De Telegraaf. “I also have two stomas and respiratory equipment.”

Heijstek currently receives care from six women she calls her “golden girls,” in addition to her husband. “They’re fantastic,” she said. “But if one of them decides to leave, I have a serious problem.”

Recently, she experienced how hard it is to replace a caregiver. “One left to care for her child, and I started looking for a new nurse. But those with a BIG registration — which shows formal qualifications — almost all work for care institutions because they can earn more there.”

Eventually, she found a qualified caregiver who does not yet have a BIG registration. “She’s fantastic, so I’m thrilled,” said Heijstek. “But I’m only allowed to pay her the lower rate for informal care, around 25 euros gross per hour, which is not very appealing. Thankfully, she agreed anyway.”

Molenaar said PGB rates vary greatly depending on the municipality or health insurer, creating inequality. “It shouldn’t matter where you live or who you’re insured with when it comes to how much you can pay your care workers,” she said.

Small-scale residential care homes — for people with disabilities or elderly individuals — also often use PGBs to jointly hire staff. Residents then pay separately for housing and living expenses. “We see many of these small living groups struggling to pay for care. A night-shift caregiver, for example, is very expensive,” said Molenaar.

Some individuals are reportedly giving up and switching to standard in-kind care, Molenaar said. But Heijstek refuses to consider that. “I like going out. That’s only possible because I have a caregiver with me,” she said. “With in-kind care, that’s not possible. You’re much more stuck at home. I’m just too full of life for that. The independence you get with a PGB is very important to me.”
During a debate in the Tweede Kamer last week, multiple parties expressed concern about insufficient PGB compensation. “It would save a lot of stress and paperwork if we could sort this out for these people,” said BBB lawmaker Rikkers.

NSC’s Janssen called for “fair and clear PGB rates,” while ChristenUnie’s Bikker pointed to the strain on Thomas Houses and Herbergiers: “They’re under pressure because they’re not receiving enough indexation to keep up with rising collective labor agreements and official rates.”

State Secretary for Long-Term Care Vicky Maeijer acknowledged the gravity of the situation during the debate. “I share the view that the collapse of these homes would be undesirable,” she said to De Telegraaf. “But I’m in a complicated bind. On the one hand, I’m not allowed to interfere in the system that applies across the entire care sector. On the other hand, we are hearing reports of unacceptable situations.”

Maeijer said she is in discussions with various residential initiatives and care offices. “Hopefully, we’ll still be able to reach a solution that way,” she said.