One in five people are living with disabilities in the United States, yet little is known about the quality of care they receive and barriers they have to accessing care. The Agency for Healthcare Research and Quality (AHRQ) showcased new approaches and technologies for improving the care of this priority population at a session during its Annual Conference in September. It also recently released an Evidence-based Practice Report on measuring the outcomes of care for people with disabilities. Research Activities asked Harvey Schwartz, PhD, AHRQ's senior advisor on priority populations, to talk about the health care issues that need to be addressed to improve care for patients with disabilities.
Research Activities (RA): The session you and Dr. Ileana Ponce-Gonzalez chaired at the AHRQ annual meeting discussed various physical, communication, and other barriers to care faced by patients with disabilities. Could you describe those?
Harvey Schwartz (HS): To give you an idea of the unique situation faced by these patients, a person with an intellectual disability may visit a doctor's office several times before being comfortable enough to get up on the examination table. It's a level of comfort that is more difficult for these patients to reach than other patients. Other barriers for many people with disabilities include lack of height-adjustable examination tables, weight scales accessible for those with mobility or activity limitations, lack of broad doorways for wheelchairs, and sign language interpreters for the deaf. Exterior access with ramps, building access with handrails, interior-accessible public spaces, and van-accessible parking are still problems in some places.
Some of the biggest barriers include structural challenges with the delivery of health care, including providers' inadequate disability competency and awareness. All these barriers are compounded further by lack of affordable and adequate health insurance and lack of long-term assistance at home, specialty care, long-term care, care coordination, prescription medications, durable medical equipment, and assistive technology. Whether most or few facilities are accessible for people with disabilities or have available interpreters and suitable technology is not known, because there simply isn't much data reported on the accessibility of facilities.
RA: Why is so little known about persons with disabilities versus other priority populations?
HS: This lack of awareness of the needs of people with disabilities is part of the challenge. The heterogeneity of this population and the broad range of classifications and definitions of disability add to the challenge. Little data are collected on people with disabilities. Also, the way data are collected are different, so it is difficult at best to adapt them for use in health services research or quality improvement research. Moreover, very few measures we use to assess the quality of care take their specific health care needs into account.
RA: AHRQ's report lists outcome measures that could be used to measure the care for people with disabilities. Will this move research on this group forward?
HS: It definitely helps. The report identified a lengthy list of outcome measures, which vary by the perspectives of researchers in different fields. For example, a geriatrician might look at a person's functional status by measuring six simple activities of daily living, such as the ability to dress oneself. He looks at intermediate steps such as the patient's need for supervision, queuing, and partial assistance with dressing. On the other hand, an occupational therapist would likely break down the dressing task into 26 steps (selecting the clothing, putting it on, fastening the closures, etc.). Both are attempts to look at meaningful measures of outcomes for patients with disabilities.
The report also noted the importance of measures for specific groups and generic measures for cross-group comparisons. Overall, the report shows that we are in the early stages of research development in this area. Quality improvement research for people with disabilities could benefit from organized databases and collaboration and coordination of efforts across medical interventions, rehabilitation, and social support provision.
RA: What remedies are being developed or that you envision happening in the near future?
HS: Addressing the big barriers will entail identification of best practices in treating people with disabilities, educating physicians and other providers to increase awareness and competence, and improving access to facilities, health information, and services.
RA: Health care for people with disabilities can present special challenges. For example, disability problems can be worsened or complicated by other medical, psychological, economic, and social problems. In similar fashion, management of medical problems can be complicated by disability. Often optimal care for these patients requires coordination of medical, community, and social services. What is the state of care coordination for this group now and how can it be improved?
HS: Among the special challenges is a lack of evidence-based information to guide decisionmakers on how best to integrate systems within different contexts and for different desired outcomes for people with disabilities. A related challenge is a lack of standardized tools to evaluate health outcomes for patients with disabilities in integrated systems of care. Currently, insurance schemes do not adequately compensate health care providers for the time required to provide care coordination for people with disabilities. Also, many people with disabilities report gaps in health care insurance coverage that limit or prevent care coordination that is critical for health, independence, and self-determination. Some other reports suggest that inadequate transportation, limited personal assistance, and difficulty navigating the insurance system obstruct or delay care or lead to skipping medication or going without needed equipment. These problems can lead to patients ending up in the emergency department or being hospitalized.
A coherent investigative strategy that will inform policy and planning for the growing number of people who will acquire disabilities with age, and for the overall future impact of disability on society should improve the state of care coordination. Collaboration and coordination of quality improvement research efforts across medical interventions, rehabilitation, and social support provision should also enhance the state of care coordination.
Lastly, one model that holds promise for improving health outcomes for people with disabilities in various contexts is the Patient Centered Medical Home (PCMH) Model. Evidence suggests that a PCMH has the possibility of improving care processes for patients with complex needs by having a primary care provider that coordinates all care.
RA: Are there some health care needs that have been overlooked for young adults with disabilities versus children with special health care needs and the elderly with disabilities?
HS: I will focus on a few examples. One is the readiness of the adult health care system to take care of young adults, including young veterans with disabilities and chronic conditions. Adult health care providers generally do not have comprehensive training to address the needs of this population, nor are they well-positioned to spend the extra time that is necessary to care for these young adults. Further, this is driven by the failure of the reimbursement system to provide adequate additional payments to compensate providers for the additional effort that is required. Another challenge facing young adults is their need to have interactions with different agencies and organizations, such as hospitals, physician offices, mental health providers, vocational training, rehabilitation, and social services, each of which is concerned with only one aspect of these individuals' lives.
Another example is middle-aged adults with intellectual or developmental disabilities and chronic medical conditions who are still living with their parents, who decline as they age. When their parents need to enter a nursing home, not only are the people with intellectual and developmental disabilities without a place to live, they are also without their family caregivers.
RA: The AHRQ annual meeting session showcased innovative technologies for persons with disabilities. What do you think are the most promising approaches to improving their care quality, access, and participation in care?
HS: To reveal new directions in technology, Dr. Ponce-Gonzalez and I invited Drs. Steven Barnett of the University of Rochester Medical Center, David O'Hara, of the Westchester Institute for Human Development in New York, and Shaun Kane, of the University of Maryland, Baltimore County, who are on the cutting edge.
Dr. Barnett's adaptation of the Consumer Assessment of Health Plans Survey, which may soon be used by deaf patients to evaluate their health care, makes the survey accessible by use of visual cues and a touch screen for those who are deaf and use American Sign Language. These types of adaptations are needed to identify and address the health and health care priorities for this particular group.
Dr. O'Hara is developing self-directed surveys and patient education tools that use multi-modal presentation and accessible design for individuals with intellectual and developmental disabilities. These tools can increase independence and reduce staff time in interviewing and entering/aggregating data. This can help individuals with cognitive disabilities to become active participants in their own health and wellness.
Dr. Kane's research lab is redesigning existing devices to make them more accessible for persons with disabilities by involving future users in design research and device development. This approach holds promise for improving the quality of care for people with disabilities. One example from Dr. Kane's research is a location-aware communication tool for people with aphasia. The redesigned device uses context to guide the user on what to say (e.g., talk about medicine when at the doctor's office). Another type of redesign his lab is working on is access overlays to produce accessible touch screens for blind people.
RA: Is AHRQ stepping up its research in this area?
HS: AHRQ encourages grant applications that propose research that focuses on the health care for priority populations, including populations with disabilities. Topics include implementation of research and interventions that aim to reduce disparities in priority populations and settings; addressing known gaps in research dealing with priority populations; development of methods to improve outcomes for priority populations in AHRQ-sponsored research; and research on crosscutting issues involving multiple priority population groups and settings (for example, children with disabilities, women with disabilities, racial and ethnic minorities with disabilities, people with disabilities receiving care in rural areas, etc).
RA: Finally, what should clinicians and the health care system do differently to better serve this population?
HS: As Helen Keller said, "Science may have found a cure for most evils, but it has found no remedy for the worst of them all—the apathy of human beings." I am not saying clinicians are apathetic. Far from it. They want to do the best for each patient. However, the health care system has not adequately trained them to care for people with disabilities in a patient-centered manner that respects the whole person.
The health care system needs to change the way it views people with disabilities. Health care professionals in all types of facilities must understand disability as more complex than physical, cognitive, or emotional dysfunction. A new model must be envisioned that takes into account the range of barriers to care for these patients. These barriers include environmental, architectural, logistical, societal, and cultural.
Editor's note: You can view the Evidence-based Practice Report on measuring the outcomes of care for people with disabilities at the
Effective Health Care Program