Note: This transcript has been created with a combination of machine ears and human eyes. There may be small differences between this document and the audio version, which is one of many reasons we encourage you to listen to the episode above! (From: NPR podcast, TRADEOFFS, March 21, 2024)
Dan Gorenstein (DG): The U.S. locked away hundreds of thousands of people for decades with conditions like Down syndrome and autism in state-run institutions.
Clip from Geraldo Rivera Willowbook report: The doctor had warned me it would be bad. It was horrible.
DG: Neglect and abuse could run rampant.
Willowbrook report: Their life is just hours of nothing to do. No one to talk to. No expectations. Just an endless life of misery and filth.
DG: Then on June 22, 1999…
SCOTUS clip: The opinion of the Court in No. 98-536, Olmstead vs L. C. will be announced by Justice Ginsburg…
DG: The Supreme Court issued the Olmstead ruling and slammed the door on that dark era in American history.
Justice Ginsburg: Unjustified institutionalization of persons with mental disabilities we hold qualifies as discrimination by reason of a disability within the compass of the ADA’s Title II.
DG: This decision opened up the chance for people with disabilities to live more freely and fully. But more than two decades later, physicians, hospitals and insurers often make it difficult to live that life. Today, what it will take for the nation to get closer to the full promise of Olmstead — and one doctor’s work to forge a better path.
From the studio at the Leonard Davis Institute at the University of Pennsylvania, I’m Dan Gorenstein. This is Tradeoffs.
***
DG: Clarissa Kripke began her career in 1999, the year the Supreme Court issued Olmstead. She liked that anyone could walk into her office as a family doc at the University of California, San Francisco.
Clarissa Kripke (CK): We take care of people from birth to death. We accept everybody and we do our best.
DG: But to this day — 25 years later — Clarissa still believes she failed to ‘do her best’ with one of her first patients, a woman we’re calling Paula to protect her privacy.
CK: She had a lot of skills. She walked. She talked. She checked her own blood sugars.
DG: Paula had diabetes and an intellectual disability. She lived in a small group home outside San Francisco, and was having trouble.One day, Paula threw a chair at one of the group home staff.
CK: They sent her to the hospital for a psychiatric admission. They refused to take her home. They said, “We don’t want her back.”
DG: Most group home workers, doctors, nurses and insurers were just learning to treat adults with disabilities who were leaving institutions — and it was tough. A 2003 survey showed that a majority of folks felt disrespected by their providers. Other research showed people were overmedicated and misdiagnosed.
Clarissa says it could feel overwhelming.
CK: People were just showing up in doctor’s offices in ones and twos and threes, but since there wasn’t really a way to take on a cohort of patients and make it your day job to really get good at it, we didn’t.
DG: Paula landed in a new group home. Clarissa picked up a call several months later saying that Paula was doing great — diabetes under control, no behavioral issues. Clarissa said, “bring her in.”
CK: She comes into my office, wheeled in in a wheelchair, not speaking. Anybody who had ever met her before would know something dramatic had happened.
DG: A total metamorphosis.
CK: She died two weeks later.
DG: Paula, and her story, have stuck with Clarissa. So many woulda, coulda, shoulda’s. Clarissa, after the fact, realized Paula acting out was her trying to express pain. And she had let eight weeks go without checking in on her patient.
But this was also a chance to learn.
CK: It’s important to me that if I make a mistake that I honor the memory of my patient by not making the same mistake myself again and by teaching others how to avoid the same mistakes.
DG: This health system failure fuels Clarissa, and it infuriates her too. For all the hard-fought progress she’s made professionally — designing a first-of-its-kind program — Clarissa thinks outcomes like Paula’s are as likely to happen today as they were back then.
CK: There’s a tenant in the disability rights movement that if you aren’t ashamed of what you were doing 10 years ago, then you’re not doing something right.
DG: Conditions have shifted for the 2 million U.S. adults with intellectual and developmental disabilities since the Olmstead ruling and Paula’s death.
The number of people in large, state-run facilities has plummeted to fewer than 20,000. Most now live with family, on their own or in small group homes.
But the 30 sources we spoke to for this story — including providers, researchers, people with disabilities and federal officials — all say the health care system is struggling to meet the needs of this population.
University of Chicago researcher Harold Pollack.
Harold Pollack: People with intellectual disabilities live full human lives and need to be treated, respected [and] addressed the same way that we do every other patient who shows up at the doctor. And we are a long way from that.
DG: There’s little high quality data on this population, but the numbers we do have paint a troubling picture.
Patients are less likely to get preventive care like dental exams and mammograms, and they’re more likely to take trips to the ER — trips that are avoidable. Just 4 in 10 doctors say they feel “very confident” in providing the same quality of care to people with a disability as those without one.
That’s all despite Medicaid, spending north of $40 billion a year to help this group thrive outside of institutions. To top it all off, we’ve seen people’s civil rights violated — providers denying patients interpreters [and] states locking people in jails and psych wards instead of serving them in the community.
In the days immediately following Paula’s death, a question gnawed at Clarissa.
CK: Can we do better than this?
DG: Clarissa felt she had two very compelling reasons to rise to her own call.
CK: It’s frustrating, not only as a physician to not be able to provide the care that I feel my patients need and deserve, but it’s a personal issue too because I have a kid who needs that care and I can’t access it even for my own kid.
Rachel: H-I hi, I am R-A-C-H-E-L. Hi, I’m Rachel.
DG: In 2006, Clarissa’s daughter Rachel, who points to letters on a piece of paper to communicate, was diagnosed with autism.
Rachel: D-A-U-G-H -T-E-R. I’m Dr. Kripke’s daughter.
DG: Clarissa had all the motivation she needed — just no roadmap. But she did know what didn’t work.
CK: When people come into my office, I can’t get them on the exam table. I can’t get a weight. I only have 15 minute appointments.
DG: Making it up as she went along, Clarissa decided to experiment: Ditch the quickie appointments and cramped exam rooms and light out to group homes where her patients lived. These house calls, Clarissa learned, allowed her to more fully take in the person, and ask better questions.
CK: How do you want to spend your day? Where do you want to go? What do you want to do?
DG: The kinds of questions most doctors failed to ask her daughter Rachel, and truthfully, the kinds of questions Clarissa wished she had asked Paula.
But to realize her grand ambition — basically turning her practice inside out — Clarissa knew she’d need to get paid in new ways and find partners, insurers and providers, who shared her vision.
CK: That everyone was going to have all the health care services they need to maximize their potential.
DG: We go inside the model Clarissa and the team built, the impact it’s had, and meet one of the people it’s helped after the break.
MIDROLL
DG: Welcome back. Nearly 25 years ago, the Supreme Court cemented the rights of people with intellectual and developmental disabilities to live more freely. Now that more adults live in the community, though, data suggests the health care system is struggling to meet their needs.
The work of doctor Clarissa Kripke in the San Francisco Bay Area is an exception. She’s teamed up with a health insurer, local agencies and advocates to help people live healthier, more independent lives.
CK: People still today believe that there are some people who need to be in institutions because their needs are too great. That’s just not true. We’ve proved that even people with the most complex needs can be served in the community.
DG: Over the last 15 years, Clarissa and this group have chiseled out a picture of what’s possible — care that focuses on people’s medical and social needs, advocating for nicer homes with more staffing, and pushing to get their hands on more research to understand how to best care for adults who are living longer than ever before. Formally, Clarissa calls this the CART model, which stands for clinical services, advocacy, research and training, but really, she says, it’s just common sense.
CK: Health care is about more than being free from illness. Wellness is about being able to make your best contribution, being able to share your gifts to vote, to work.
DG: We wanted to see this model in action. So, we asked Senior Producer Leslie Walker to spend some time with Clarissa and her patients.
Leslie Walker (LW): Clarissa and I meet on a quiet suburban street about 40 minutes south of San Francisco in Redwood City. We walk into a nice house with blue shingles and white trim. Five people live here — all have disabilities and serious 24/7 medical needs.
Clarissa, wearing a dress — Lands End, she jokes, because she’s practical like that — unpacks her black roller bag and pulls out the beating heart of her mobile clinic: her laptop.
CK: Going to set myself up on the dining room table and get into the electronic medical record… [Unzipping sound]
LW: She logs on and gets right to work typing out a prescription. I look around. A fish tank is gurgling. There’s a sliding door that opens to a big, tree-lined backyard.
Part of the early ‘CART model work,’ Clarissa tells me, was advising the state of California on how to build new homes like this one.
CK: Open layout where you have good sight lines and wider doors…
LW: We head down the hall to a pair of private rooms and poke our heads into the first door on the left. Life-sized cutouts of professional wrestlers decorate the room of Kevin Carlson.
Kevin Carlson (KC): I’m a junk-junk-junkie. Junkie.
LW: I’m a junkie, says the 62-year-old wrestling superfan, who sports a graying buzzcut and is wearing a Giants baseball jersey.
Kevin was born with cerebral palsy. His arms and legs are pretty much locked. A ventilator helps him breathe.
Turns out Kevin loves telling some truly brutal jokes, like, “What do you get when you cross a rhino with an elephant?” Kevin asks me and a couple of nurses.
KC: ‘Ell if I know! [Laughter]
LW: ‘Ell if I know, Kevin says, smiling with his entire face.
Kevin relishes the groans. He’s a ham for sure, but you can also feel he just enjoys connecting with people.
As Clarissa catches up with a nurse, Kevin tells me he’s happy, doing pretty well — all things considered. When he first arrived here, he weighed about 70 pounds.
Nurse: How much are you now?
KC: 111
LW: 111 he says, proudly.
Clarissa’s grown her practice from a handful of people in just three group homes to patients in 25 homes across four counties. And she’s learned a valuable lesson: Keep it under 100 folks.
CK: When I started to write contracts for more and more homes I realized that I needed a contract that reflected the amount of time it took.
LW: Clarissa treats less than one-tenth as many patients as a typical primary care doc. She’s tracked her time and realized that for every hour of face-to-face patient care, she spends another six on what she calls the “hidden work”: Dealing with insurers and government agencies, coordinating with nurses, nutritionists, social workers, family members.
So these days, she only agrees to contracts that actually give her the time — and the money — to do what she needs to do.
CK: Secure texting at any time of day. I will do home visits. I will go to the hospital. I will go to their day program to see what’s going on.
LW: A flat $500 dollar fee per patient per month covers Clarissa’s salary, travel, tech, plus some admin support. She visits her patients in their homes at least once every three months.
Clarissa says staff help keep costs down and quality high by paying close attention and advocating for residents. Nurse Marjorie Ongpauco tells me Clarissa relies on the entire team to be her eyes and ears.
Ongpauco: She’s always, you know, she’s always asking me, “What do you think, Marge? What are your thoughts?” In the beginning I was kind of like, is this a quiz? But it’s actually not, right?
LW: Here’s a great example of what advocacy looks like in real time. Donna Valencia, who runs the group home where Kevin lives, says staff noticed Kevin’s ventilator made it tough to talk.
Valencia: You know, it’s like talking with a pillow over you.
LW: Donna and Clarissa spent weeks lobbying Kevin’s insurer to greenlight a valve that would make it easier for him to speak. He debuted it on the day of my visit and we talked for close to 30 minutes about everything from the heavy metal band Iron Maiden to his late wife who passed away nine years ago.
KC: She was a Leo. Stubborn.
LW: She was a Leo, stubborn, he said.
The work to get Kevin a valve captures the CART model’s chief aim: Help the whole person.
And that’s what struck me after spending a few days with Clarissa. She and the nurses spend a ton of time thinking about the needs of their patients as people: The places they want to go, the relationships they want to have, the schedules they want to keep.
Kevin used to live — with help — in his own place until a serious infection landed him in the hospital a few years back. What Kevin wants is a taste of what he had.
CK: Do you miss the life that you had before?
KC: Yes.
LW: Yes, Kevin says, his eyes watering a little.
LW to KC: Why is that making you emotional?
KC: Hard to say.
LW to KC: Is there something you miss doing now that you’re here?
KC: Doing stuff off the cuff, on the fly.
LW: Doing stuff off the cuff — doing stuff on the fly — he says, [like] going to heavy metal shows [and] getting high at those shows. So last fall, when some of Kevin’s favorite pro wrestlers were coming to town, staff thought, “what a perfect chance to give Kevin a taste of his old life.”
Sfx: San Jose, welcome to Monday Night Raw! [Crowd noise and bell ringing]
LW: 15,000 fans pack the SAP Center in downtown San Jose. From a front row seat, Kevin’s eyes lock on the ring.
My eyes fix on Eric, a respiratory therapist, and Josh, a nurse who buzz around Kevin.
Sfx: Suctioning machine
LW: They suction his lungs to help him breathe, check his oxygen, his catheter — all while a bunch of dudes pound beer and boo a bearded man dressed as a giant viking.
Sfx: Crowd noise
LW: Pretty soon, the crowd starts to roar. Kevin’s eyes light up. And one of his favorite wrestlers enters the ring: Seth Freakin’ Rollins.
Sfx: Rollins intro music
LW: Kevin’s totally transfixed by the action, but he’s also getting tired. He starts to need extra oxygen, and about two hours into this three hour spandex extravaganza, Eric calls it. Says it’s time to go home. Kevin, still amped, recaps the highlights with Josh as we head to the van.
Josh: I can’t believe they do like backflips off of the top rope just like, soaring through the air? That’s crazy.
KC: Yeah!
Josh: So much better in person, huh?
KC: Yeah!
LW: This is Clarissa’s model in action: Eric and Josh working hard to support Kevin; Kevin’s health even taking a bit of a hit — he was exhausted for a week after the match.
Clarissa says this is what it takes for health care to do better by people with disabilities: the money and effort to staff a trip like this [and] the conviction that sometimes physical health takes a second seat to joy. All so that Kevin can live more the life he wants.
CK: It’s professionally invigorating, personally invigorating, and meaningful, deeply meaningful work.
DG: We’re back with senior producer Leslie Walker talking about what it would take to scale this care nationwide after the break.
MIDROLL
DG: Welcome back. Clarissa Kripke’s model, the CART program, shows us what care for people with some of the most complex medical needs looks like in a small corner of our country’s health care system. But what about for the other 2 million adults with developmental and intellectual disabilities?
To talk about the national landscape, let’s bring back Senior Producer Leslie Walker.
Hey, Leslie.
LW: Hey, Dan.
DG: So look, your field report about Kevin Carlson and the wrestling match captured what prioritizing the needs of the patient looks like, and I was blown away by the resources that must have taken.
LW: Absolutely. The tickets, the van, the extra oxygen and ventilator batteries, the intensive care from Josh and Eric — all just to get Kevin out of the house for a few hours.
DG: And like, how many other people with disabilities out there have access to those kinds of resources?
LW: It’s hard to know for sure, but Medicaid does spend more than $40 billion dollars a year on community care like rehab after leaving the hospital, rides to work, help making meals. But what people get depends a lot on where they live.
DG: You mean because of Medicaid, the state run program? So each state’s going to have a different deal.
LW: Exactly. And in some states, it’s pretty bad. There are some crazy wait lists out there. Florida, for example, has more than 70,000 folks waiting,South Carolina more than 40,000 — all people going without services they say they need to live in the community. And for the types of folks we’re talking about in this story, they’re waiting four years on average.
DG: Wow, so on the one hand you’ve got a situation like Kevin’s but on the other, you’ve got folks going years without help shopping for groceries or managing their meds.
LW: That’s right, and some research suggests these shortfalls hit Black and Hispanic people harder.
I talked to Alison Barkoff, who heads up all things community living at the U.S. Department of Health and Human Services. She said if we’re going to have more people with disabilities live independently — basically, more wrestling matches — more money must be spent.
Alison Barkoff (AB): The biggest barrier to translating the promise of Olmstead into reality is funding. We need more funding to expand services, to make sure everybody has the opportunity to live real included lives in the community.
DG: Fine, but I can hear state lawmakers from here talking about ‘tough budget realities.’ In fact, Indiana is moving to cut funding for families with disabilities. What’s the sell here to lawmakers? Can any of these services actually save money?
LW: So research shows for really sick people like Kevin, his care is cheaper living in a group home than in a nursing home. But for people with fewer medical needs, states would need to spend more money on housing, on schools to make them more inclusive.
And another thing, Dan. There’s nowhere near enough workers to help people like Kevin shower, dress and eat every day. Again, here’s Alison Barkoff.
AB: Because of low wages and a lack of respect, we are at a point where we have … the vast majority of providers who are turning down referrals and even closing services because of the direct care workforce crisis.
LW: Let me say that again, Dan. Social service providers who care for this population are turning people away — turning down business — because they lack enough staff. We’re talking about close to 8 million vacant jobs expected over this decade.
DG: Okay. You’ve given me an answer to what care looks like for many of the 2 million people who aren’t Dr. Clarissa Kripke’s patients: wait lists, budget cuts and staffing shortages — a world away from Kevin’s experience.
LW: It is, and that puts a point on the chronic underfunding for this population.
At the same time, there is some good news worth talking about. Clarissa estimates there’s close to 50 other docs like her out there trying to improve care. She’s created an office at UCSF to share best practices. And she guesses she’s trained more than 10,000 providers and caregivers.
DG: Progress, it sounds like, but small scale given the need.
Last question, Leslie. We’ve talked about money a bunch, and that can obviously be a hard thing to squeeze out of lawmakers. Is there anything else that could be done here to advance the ball?
LW: Yes, there are actually a few recent federal rule changes that advocates told me should make a big difference.
The first, which kicked in last year, gives group home residents more of the freedom Kevin has, like setting their own schedules or locking their bedroom doors.
DG: I see — making these group homes truly feel like home, not just some institution by another name.
LW: Right. Then you’ve got rules expected out this spring that would require any hospital or clinic that gets federal money to add more accessible equipment within two years. Think exam tables and scales.
DG: Helping people, literally, get in the door…
LW: That’s right and that same batch of rules, Dan, bans hospitals from rationing drugs or ventilators purely based on someone’s disability — something we saw in the pandemic.
Finally, there’s a bigger change that could force health insurers, at least in theory, to get people like Kevin the stuff they need faster, like speaking valves and wheelchairs.
DG: Okay, so those do sound like some meaningful changes. To close out here, I guess I’d like to circle back to our main character, Clarissa Kripke. I’m wondering, after two decades of doing this pioneering work [and] fighting against all these policy headwinds you just outlined, does she feel she’s had the impact she set out to have?
LW: Yeah, I did ask her that. She said when she looks around, she sees how many people, including her own daughter, still don’t have everything they need.
CK: I often feel like I failed.ans But then when I look back at where we were and where we are now, I realize that we have really made a profound change in how people perceive the goal of health care, that health care is about helping people to participate fully in their community.
LW: And when she said that, Dan, part of me was like that’s awesome that she feels she’s achieved that kind of change in her community in the San Francisco Bay Area. But then part of me was like damn, this is an indictment of how little progress has been made in so many other parts of our health care system.
Like, this primary care doctor has got a dude on a ventilator ringside at a wrestling match while other clinicians are refusing to even take on these patients; hospitals are denying them organ transplants; and insurers are slow walking the wheelchairs they need.
DG: Right, like it’s pretty clear here, Leslie, that health care is in this powerful position to do more because people who have disabilities rely on the health care system to help them live their lives as fully as possible.
LW: Yes. This work absolutely takes time and effort — and definitely, money — but it’s possible. Just like Clarissa said herself, this work proves the health care system can help people like Kevin live more the lives they want to live.
DG: Leslie Walker, thanks for your reporting on this story.
LW: You’re welcome, Dan.
DG: I’m Dan Gorenstein. This is Tradeoffs.
Tradeoffs’ coverage of complex care is supported, in part, by Arnold Ventures.