Sunday, June 02, 2013

Another side of health care

Many months ago, Holly Jarek wrote to me:  "I was wondering if sometime in the future, we might schedule a visit for you to come out and see Seven Hills Pediatric Center. Would love the opportunity to share another side of health care with you."

Well, "sometime" finally happened, and I had a chance to visit this pediatric nursing home in Groton, MA.  This is one of several such facilities across the country, serving an estimated 6000 or so residents who are cognitively under the age of 12 months and are non-ambulatory.  Many require oxygen, feeding tubes, tracheostomies, and other complex medical equipment.  The vast majority are on permanent formula diets.  The 80+ children at Seven Hills receive all necessary medical, nursing, therapy and leisure services.  They also attend a private, special education school, go on field trips and participate in community activities.  Because there is no other place for them to go upon reaching adulthood (age 22), they stay on.  One resident is in his 30s.

Funding for the medical services is provided by Medicaid.  Funding for the school programs is provided under the state's special education laws by the school districts from which the children come.  A small amount of additional funding comes from the state DSS.

An adjacent dental clinic provides dental services for the residents but also other developmentally disabled people in the community.

Eyal Cohen and others have noted, "Increasing prevalence of children with complex and chronic diseases has occurred in the last half century and will likely continue to occur." Why? Well, the good news is that medical advances in neonatal intensive care and trauma care have saved lives of children who previously would have died.  The bad news is that some of those who have been saved end up with the kinds of impairments that lead them to places like Seven Hills.  These patients require care that is much more expensive than others.  Cohen and others note (in a review of Canadian patients), "Although a small proportion of the population, CMC (children with medical complexity) account for a substantial proportion of health care costs."  A recent unpublished presentation about North Carolina noted the same thing, with 5% of children under 18 incurring 54% of the cost for children’s care in Medicaid.

The current political environment for this kind of care is not good.  Let's start with the votes:  48 million Medicare voters versus 0 children voters!  But beyond this, the current focus on Medicaid is on budget cuts.  Where expansion is being considered, it is adult-centric.  Safety net hospitals are seeing phased reductions under the health reform law.

So the prognosis for organizations like Seven Hills that take care of severe cases, as well as others that take care of other children with medical complexity, is an increased demand for their services combined with a disproportionate reduction in state and federal support.  This group thus joins other disenfranchised sectors of the health care community while the government pours money into those sectors with the political power to get what they want when they want it.


Catherine Rose said...

Paul, Thanks for highlighting a major area of risk. I'm a mom to one of those medically-saved children and many of her health needs are covered only by Medicaid help. Thank you again, Catherine

e-Patient Dave said...

This kinda rips my heart out. I know what you mean about the costs we end up with as medicine prevents deaths - the same is keeping an unprecedented number of seniors alive who would have died. (I'm one.)

The sad part - but also the opportunity - is that there will be plenty of money for this and more if we have the brains & guts to cut out the $$750 billion of unnecessary spending the Institute of Medicine has led to.

For starters, there's the $306 million of useless proton beam machines you just pointed out the other day.

I do get inspired when I hear of people who provide services like this, in what seem like the worst of circumstances. Thanks.