Living with a Disability in America

SHANOOR SEERVAI: Hi everyone! Welcome to The Dose. I’m Shanoor Seervai, and today we’re going to talk about what it’s like for Americans with disabilities to access health care. Joining me are Martha Hostetter and Sarah Klein, who have been writing about health care for more than 15 years.

Martha and Sarah, welcome to the show.

MARTHA HOSTETTER and SARAH KLEIN: Thank you for having us.

SHANOOR SEERVAI: So you’ve been working on this report for about six months, and you’ve done a ton of interviews: with people living with disabilities, and the health providers and plans serving them, as well as policymakers, disability experts, and advocates to better understand how health care system in the U.S. does and does not meet their needs. How does it feel to be done?

SARAH KLEIN: You never feel like you are done with reports like these — the more you learn, the more you have to learn, you realize.

SHANOOR SEERVAI: The final report looks at more than 10 programs in the U.S. that stand out and do a really good job caring for people with disabilities. You also look at some of the challenges of extending programs like this to more Americans. To get started, tell me why you chose to focus on Americans with disabilities?

SARAH KLEIN: This report is an extension of a case study series Martha and I have been working on that describes models of care for people who have multiple, complex health needs and are also costly to treat.

Americans with disabilities are an important part of this group: they have a much higher incidence of chronic and acute conditions, and are far more likely to be admitted to the hospital. Despite this, their needs are often overlooked by the health care system. Medical practices are often not wheelchair-accessible and don’t have the equipment to perform tests like mammograms that most of us take for granted.

SARAH KLEIN: The lack of attention is striking; there are so many small adjustments the health system could have made, but hasn’t — simple things like adding Velcro straps to mammography equipment to stabilize women who are unsteady or just asking patients before a visit if there any accessibility concerns.

There are also really significant cultural barriers. As patients and advocates described, some providers fixate on the disabilities to such an extent they miss other problems and basic preventive care like cancer screenings. Patients in wheelchairs may not be asked about sexually transmitted diseases because providers assume they are not having sex, for example. So the more basic needs of patients with disabilities go ignored.

SHANOOR SEERVAI: Okay, so what was the most startling thing you discovered in the course of your research?

MARTHA HOSTETTER: I think what was most surprising to me was how hard it can be for people with disabilities to get good primary care because of the physical and cultural barriers Sarah was just describing. But it’s also because of geographic barriers. Specialized clinics for people with disabilities tend to be in cities. We heard that people drive several hours to visit one of the nation’s few adult spina bifida clinics, in Pittsburgh.

And the consequences of all of these kinds of barriers are that people may have delayed diagnoses, improper treatment, or even die prematurely.

People with serious mental illnesses, for example, die 10 to 30 years younger than others, often from health problems that could have been treated or prevented. One statistic I found particularly jarring: people who have schizophrenia are 3.5 times as likely to die from cardiovascular conditions. This could be related to the side effects of medication and smoking, which is common in this population. But the evidence suggests that it’s in part because their conditions are not diagnosed or treated in a timely way.

SHANOOR SEERVAI: That is disturbing. But you looked at programs that are exceptions — that are doing a good job and have created models for people with different types of disabilities. And you found some common factors: that these programs focus on prevention, engage patients, and also integrate a whole range of long-term services and supports. Before we get into examples, I have to ask — isn’t it expensive to fund these programs?

SARAH KLEIN: Well, the short answer is yes. I think this is a common concern because these are lifelong conditions, and health care costs for this group are five times higher than for the general population. But as one person pointed out to us: we never ask, it is it too expensive to treat cancer or end-stage renal disease?

Having said that, I do think we need to acknowledge that there are opportunities to reduce costs by better managing issues, like skin breakdown for people with mobility challenges, that can lead to really serious complications if not identified and treated early. A number of states are leaning on managed care plans to coordinate services and manage both medical and long-term services. It’s an open question whether that will lead to savings.

MARTHA HOSTETTER: The other issue is that these services have historically been underfunded. People in wheelchairs struggle to get them repaired or get devices that make it possible for them to make their own dinner, open the door, use computers, or go to work. The programs we looked at often struggle to provide services and many depend on philanthropy to stay afloat.

SHANOOR SEERVAI: That makes sense. Looking at the report, I noticed that you split programs up into three different categories: for people with physical disabilities, intellectual or developmental disabilities, and serious mental illnesses. Why?

MARTHA HOSTETTER: We went back and forth on this. There is so much similarity in terms of difficulty accessing care; lack of engagement and trust with medical system; need for long-term services and support. The other challenge is these are not watertight compartments. It’s not uncommon, for instance, for a person with intellectual and developmental disabilities to also have mental illnesses.

But as we looked for exemplary programs, we did find providers tended to specialize in order to meet different needs and medical issues.

SHANOOR SEERVAI: Tell me about a program that does well at serving people with physical disabilities.

MARTHA HOSTETTER: A good example is Independence Care System. It’s a managed medical and long-term care plan in New York City that serves people with physical disabilities.

SHANOOR SEERVAI: So what does Independence Care System do differently from others?

MARTHA HOSTETTER: It’s a combination of things. It starts with ensuring patients have access to primary care. They’ve trained a handful of providers to make cancer screenings and other preventive care more accessible. And they send nurses along to visits with members to offer tips on how to enable accurate and comfortable exams.

They also seem to be good at knowing when people need help. Under any traditional system of assessing medical risk, all of ICS’ members would be considered high risk; they have profound limitations and many need round the clock care.

But in reality, most of their members are relatively healthy most of the time. So the health plan has to detect more subtle cues to identify when a member may need help — like when they can’t name their primary care doctor, which they’ve found is a signal that they haven’t developed a relationship with them and may not seek care when they don’t feel well.

They told us the story of one woman, who is paraplegic and dependent on a ventilator — and who hires and organizes all of her aides, works every day, and had only been hospitalized twice in 30 years. But when she developed a respiratory infection, ICS was able to quickly send a team of a nurse, social worker, and behavioral health specialist to support her through her hospitalization and recovery.

SARAH KLEIN: So there’s another thing ICS does that is unique. They recognize that people with disabilities tend to be isolated, and that it’s very important to find ways to combat isolation. The plan offers free membership to Axis Project — an accessible gym and community center that offers fitness classes, physical therapy, music classes, wheelchair repair services, a wide variety of social activities. It’s also a place where Independence Care System sends their care managers to meet with members. As one told us, it’s actually the best place to connect with members because they are relaxed from the exercise and from being around friends, which creates an opportunity to learn things they might not otherwise.

SHANOOR SEERVAI: Wow, so Independence Care System care managers actually go to the patient, and at the gym! That’s definitely out of the box of the medical settings we typically think of, like clinics and hospitals. Are there other ways that clinicians can establish a rapport and build trust with patients?

SARAH KLEIN: There’s one doctor in Ohio, Julie Gentile, who has developed strategies for doing this with patients who have intellectual and developmental disabilities. She got interested in this as young psychiatrist who treated patients with mental illnesses and IDD — and went on to creating a Center of Excellence that specializes in treating them.

She says effective medical visits have to start by creating an alliance with the patient, no matter how limited their communication skills are. She’s seen over and over clinicians will speak to caregivers rather than patients themselves. Clinicians may also ignore nonverbal cues and signs of distress that may indicate a medical — 85 percent of patients with IDD have some kind of untreated or undiagnosed or undertreated condition. She says once providers learn how to make a connection with patients with IDD, they’re hooked; it’s so rewarding to make a connection.

SHANOOR SEERVAI: Yeah, having a doctor who treats you well is so important — and it isn’t an added bonus to medical care, sometimes it impacts whether or not you get better! Did you encounter any patients for whom a wrong diagnosis or going undiagnosed was a problem?

MARTHA HOSTETTER: In an extreme case we heard about from Dr. Gentile, a patient with a severe intellectual disability who was noncommunicative was actually admitted to a psych hospital because he occasionally became aggressive, and was thought to be psychotic. Gentile noticed he tended to become agitated after meals, and figured out he had acid reflux; his aggression went away with an acid blocker. She’s become an expert on patients with IDD now, but this was early in her career. She was able to make this diagnosis because she paid attention — something she thinks all clinicians and other caregivers can learn to do.

We also met Heather O’Connor, who struggled on and off with depression and other symptoms of mental illnesses but went for years without a clear diagnosis. It wasn’t until she was in her 40s that she went to a specialist in another state and received a diagnosis of autism. This in turn helped her, and her doctors, understand some of her behaviors. Another thing that helped her was a clubhouse for people with mental illnesses — there are hundreds of these around the country.

In recent years Heather set a few goals for herself and she’s starting to accomplish them: she decided she wanted to graduate from college, and she has, with a degree in anthropology. Now she is hoping to learn how to drive.

SHANOOR SEERVAI: That’s wonderful to hear. Her story shows what’s possible when people get the right combination of medical and other support. But it makes me wonder — Heather was able to get to a clinic and ultimately a diagnosis — what if someone’s life is too unstable for them to access the health care system in a clinical setting?

SARAH KLEIN: You’re not the only one to wonder about that. That’s where programs like Assertive Community Treatment come in. We talked to one, in Iowa, that provided intensive support for a man with bipolar disorder on the day he was released from jail — surrounding him with support from a nurse, mental health counselor, substance-abuse specialist, as well as peers. The team found him temporary housing and made daily trips to deliver his medication and after a few months, he had moved into permanent housing and no longer required the daily visits. With that initial intensive support he has remained stably housed for 10 months, with no hospitalizations or incarcerations.

SHANOOR SEERVAI: Yeah, there are so many studies that show how access to housing actually improves people health, even though it isn’t traditional medical care.

SARAH KLEIN: Exactly. We see a lot of programs for people with disabilities do more than provide medical care. They offer services including transportation, counseling, classes on nutrition and weight loss, and other supports to help people fulfill their goals.

SHANOOR SEERVAI: That’s amazing. But how likely do you think it is for programs like this to spread? It sounds like the norm is quite different — but is their potential for others to follow their lead?

MARTHA HOSTETTER: Yes, but we need to ensure there’s funding to do so and that requires getting a better handle on the quality and adequacy of care for different disabled groups now: where are we doing well and where are we falling short? That analysis should consider how well people are supported to live as independently as possible. It’s not just about the quality of medical services.

And finally I’d say we need payment and policies that allow for experimentation in the way we organize care and what we pay for. There are several programs that have made strides in reducing health disparities and enabling people to live with dignity and independence. Let’s figure out how to support them and build on them and extend them to all who need them.

SHANOOR SEERVAI: That’s a great note to end on. Thank you so much, Sarah and Martha, for speaking with me today, and for doing this very important research.