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UB health team looks to boost families struggling with disabled loved ones

UB health team looks to boost families struggling with disabled loved ones

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Erie County Medical Center had the distinction last year of releasing a teen patient with severe autism from the behavioral health emergency room – after 304 days.

The 16-year-old was one of hundreds with developmental disabilities in the region – and thousands across the nation – who fall into a gray area each year. Where to best help them when an explosive outburst requires emergency care: in a mental health or more typical hospital setting?

"You can treat them and get them out but still, a lot of families at that point are beyond being able to handle things anymore," said Dr. Michael Cummings, associate medical director in charge of the ECMC Regional Center of Excellence for Behavioral Health. "You can't imagine how hard it is to acknowledge to yourself that leaving a child in an emergency room is better than taking them home."

The hospital, New York State and a quartet of regional nonprofit foundations believe they have found an answer for most parents, and patients, in such shoes – the Access to Psychiatry through Intermediate Care (APIC) program, a team that makes house calls to challenged families in 17 upstate counties.

Cummings and Janell Van Cleve established APIC in late 2014. They lead a staff of six, split into pairs, which sit down with families in crisis, connect them with key medical and social services, and develop strategies to prevent avoidable emergency room and hospital stays.

The program is free for those of any age – and their loved ones. It focuses on four key areas: medical needs, alternative behavioral health therapies, creating a better home environment, and trying to free up caregivers for much needed breaks.

"If you take a mom with severely autistic child and measure her stress levels, she measures identical to an active duty combat veteran in Afghanistan," said Cummings.

He and Van Cleve said Erie County Medicaid data shows the program has helped foster a 40 percent reduction in hospitalizations, 30 percent reduction in ER visits, and 50 percent increase in outpatient case management visits during the last 3½ years among the population it serves. They said they've also seen a 40 percent drop in family reported aggression measures and a 50 percent drop in family distress.

APIC began with a $1.8 million, five-year grant from the Peter and Elizabeth C. Tower, John R. Oishei, Patrick P. Lee, and Margaret L. Wendt foundations. It was secured by the University at Buffalo Department of Psychiatry, which runs the program and where Cummings serves as vice chair of community affairs and outreach.

Van Cleve left her job as a leader in the Erie County juvenile justice system to help him create the "wrap-around" model program.

The state offices for People With Developmental Disabilities (OPWDD) and Mental Health have also since combined to help provide a total of about $400,000 a year to sustain the program, which the two leaders expect will see roughly 500 families this year.

Q: Janell, why did you make the jump?

Van Cleve: I knew this was going to work because everything Dr. Cummings did up to that point had been very successful and we're very like-minded, efficient and effective in figuring out problems and solutions – and removing barriers. I said, "I think we can do it."

Q: What is the wrap-around model?

Cummings: In the medical model, it would be something like, "You're in a wheelchair now. Medicaid can spend a huge amount of money having you live in an assisted living setting, or a very little amount of money building a ramp so you can get in and out of your existing home...

In behavioral health, it became more about "this kid needs a peer, needs rise-and-shine help – an individual that comes into the house and helps get your kid up and on the bus." It sounds silly to parents who don't have problems getting their kids up and on the bus, but if you have a behaviorally health-challenged child and they don't get on the bus, then they don't go to school. Then you can't go to work, and after a while they get kicked out of school.

Van Cleve: Then you have Child Protective Services on your back.

Cummings: So you're paying an aide to come help a parent – for a short term. Originally, wrap-around worked really well because it kept kids out [of inpatient behavioral centers]. That can cost $120,000 per kid, per year, and wrap-around costs about $20,000. So you could serve five or six families for every one kid you kept out of placement.

Q: What is the criteria?

Cummings: You need to have some form of developmental disability. It can be an intellectual disability. It could be autism, a severe learning disorder, Down syndrome, fetal alcohol syndrome. You also need to be at risk for system penetration that's avoidable. For us, that's inappropriate hospitalizations, inappropriate ER visits, over-medication, risk of arrest or loss of school placement.

Van Cleve: It also could be a suspected disability. We get a lot of folks who call and say a child has an ... alternative track for learning, and think there's something else going on but we haven't gotten through all the testing, and nobody's really sure. If there's suspicion, we will entertain the case because we want these folks to get help sooner. We can identify what's going on and how they need to be treated.

Cummings: Everything is community based. We spend on average four months with a family. Some families we see one time. Some families we've seen since day one.

Q: Do these cases take place in every community across the region?

Cummings: We are everywhere from the roughest neighborhoods in the region we cover to the most wealthy suburbs, and everywhere in between. Many of these families already are dealing with OPWDD, Office of Mental Health, the educational system, possibly the Department of Social Services, juvenile justice systems. We're experts at this and it's hard to navigate, so families in general – regardless of education, regardless of socioeconomic status – to navigate through this system with different acronyms, different structures, is almost impossible.

We do more high-level air traffic controlling than psychiatric stuff. We installed locks and alarms at one kid's house so he can't get out while his mother sleeps – and she can get sleep without worry of being charged with child neglect. The kid does not need a prescription or a hospitalization. He needs alarms. They cost $200, where the prescription costs $1,800 a month.

If you look at all of our cases and divide by our budget, we spend on average about $2,000 per case.

One day in CPEP (ECMC's Comprehensive Psychiatric Emergency Program) is about $1,900. An inpatient stay is about $1,200 a day. Forget about the cost of jail, ambulance rides, which are harder to measure. If we can avoid one of those, it almost covers our costs. There are only a few inpatient units nationally for severely developmentally disabled kids in crisis [and in need of longer-term care]. The place that's gets used most for New York State kids is a place down in Johns Hopkins in Baltimore called the Kennedy Krieger Institute. That costs New York State, on average, about $1.4 million per kid, per year. If we prevent one kid from going, we've saved New York State more than double our operating budget.

Q: How does a house call work?

Cummings: We walk into a household and start on common ground. When you let the family tell their story, you get 90 percent of the information you were going to get anyway, just not in the order you were going to ask it. Then there will be some basic things you'll fill in. Then we work with the family and ask, "What are the three to five things we can do to make your life better?"

It's hard for families. They start with the child or identified patient, and there's a lot of stuff to do there, but we need to get to the whole family. What do you need as parents? What do the siblings need that they're not getting? These siblings don't have birthday parties. No one comes to the house. They don't have sleepovers. There are literally kids that go home and deadbolt themselves into their room because it's the only way they're safe. It's an entirely different existence.

We look at where can get the most gain, do things for families that others might laugh at, like respite funds to pay a family member. We've done everything from dinner and a movie to sending families to Russell's for an overnight package. The family gets to be human again. Mom and Dad get to take a deep breath. It's really instilling hope.

Q: How can a family reach out for its services and determine eligibility?

Van Cleve: They can call 716-406-7005; To learn more about APIC, go to our website,


Twitter: @BNrefresh, @ScottBScanlon

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