Governor Healey’s budget proposal threatens 50 years of disability rights

Every day, more than 40,000 Massachusetts residents wake up in their own beds and go about their lives thanks to a personal care attendant. These workers chop and blend food for people who cannot chew. They help people shower, bathe, and brush their teeth. They assist people who need help using the bathroom. Often, they are all that stands between a disabled person’s life in the community and their consignment to an expensive and dehumanizing long-term care facility.

These jobs are on the chopping block in the proposed budget put forward by Governor Maura Healey as she stares down a looming series of budget deficits.

The personal care attendant program is one of the main pillars of the independent living movement, a disability-led civil rights push that began in the 1960s as a fight to ensure that disabled people could live as free from discrimination and the threat of institutional incarceration as anyone else. Over the years, its supporters have weathered challenge after challenge by using the modest language of consumer choice to prove, time and again, that independent living is not just the morally right choice but always the least expensive one for state and federal health providers.

Healey knows this, which is why her proposal to slash the fundamental personal care services for the disabled is baffling, especially as an opening salvo in her attempt to grapple with a sudden budget crisis. Yet that is exactly what she has put on the table. If the Legislature agrees, an estimated 6,000 people will lose as many as 20 hours of weekly supports that make it possible for them to live with dignity, in some cases keeping them from being thrust into facilities, while also freeing up their loved ones to work their own jobs.

Undoubtedly, the governor faces difficult, unenviable decisions, but few could better resemble the phrase penny-wise and pound-foolish than this proposal. As attorney general, Healey prosecuted the kinds of private longterm assisted living facilities that MassHealth will have to pay to house disabled individuals if they cannot live independently. She brought those suits because the owners of these facilities were guilty of fraud, abuse, and neglect.

While these kinds of facilities would benefit from the crisis Healey’s cuts would create, disability advocacy organizations estimate that 4,000 workers will lose their jobs. When their incomes disappear, it will be felt in their communities, which need every dollar they can get. It is a stunning reversal, coming only months after the Healey administration notably agreed to raise the paltry $18 per hour that these attendants received to a figure that will eventually be as much as $25.65 per hour for experienced workers.

The administration has told advocates that disabled people will be able to find existing services elsewhere to make up for these losses. But when the cuts themselves are so nonsensical, vague promises are a cause for serious concern. For instance, it is likely that the replacement services will not be controlled by the people who use them and the state will not be reimbursed at 50 percent by Medicaid the way it currently is. This means that the state will give up federal money while depriving people of one of the key aspects that makes the personal care attendant program a success.

Given the notoriously complex bureaucracy that disabled people must navigate for services, it is likely that the only cost-savings will come from the most cynical of outcomes.

Many people will simply give up and not find a paid replacement for what they lose. Instead, attendants — mostly immigrants and women of color who face significant adversity — will probably end up doing this work unpaid. They’ll do it for free because they either can’t stand to watch it or realize that if they don’t address it, it makes the remaining work completely futile. After all, what attendant would do someone’s laundry and take them to the doctor but not feel compelled to address the daily issues, like incontinence, that can lead to soiled clothes and infections?

It did not have to be this way. When entering office last year, Healey had the chance to bring disabled people who understand these issues into senior positions in her administration but chose not to.

The result is an Executive Office of Health and Human Services that is staggeringly out of touch with the needs of people using PCA services, putting forward an unacceptable and shortsighted proposal that encroaches on the health, well-being, and dignity of people with complex disabilities and health conditions. Rescinding these proposed cuts would send a signal that the administration sees this as something more than business as usual. It’s a matter of human rights.

The personal care attendant program is one of the main pillars of the independent living movement.