When it comes to addressing inequities in health care services and outcomes, information truly is power. Recently the Department of Public Health (DPH) and the University of Massachusetts Medical School (UMMS) partnered on a groundbreaking assessment of the health needs of people with disabilities in the state – and the results are a dramatic call to action to reduce the very real gaps in health care services and health care outcomes that these individuals experience.
The assessment – the first of its kind in Massachusetts – was undertaken by the DPH Health and Disability Program in partnership with the UMMS Disability, Health and Employment Unit. It consisted of three separate components.
First, we performed a comprehensive review of all the existing health data which is regularly collected by DPH, including major health surveys such as the Behavioral Risk Factor Surveillance System (BRFSS) and Youth Health Survey. Our review showed that people with disabilities fare worse than people without disabilities in just about every category that these surveys asked about: physical and mental health, chronic conditions like asthma and diabetes, smoking, sexual violence, falls, and more.
Next, we asked people with disabilities, and their care providers, to fill out an online survey which asked their thoughts about what the unmet health needs of people with disabilities in the Commonwealth might be. We sent a link to the survey to a wide range of disability advocates and service providers statewide, asking them to complete the survey themselves and pass along to people with disabilities in their networks.
We crossed our fingers and hoped for 100 responses.
We got 865.
And those 865 people had plenty to say. Over three-quarters of them saw a lack of affordable housing as a big problem for people with disabilities, and nearly two-thirds mentioned inadequate dental care and inadequate mental health care. More than half cited finding a doctor who is sensitive to disability issues; getting transportation to doctor’s appointments; and having communication supports such as Braille, large print, or sign language interpreters as big problems for people with disabilities. These are huge unfilled needs, making it no wonder that people with disabilities are experiencing poorer health.
Data tell a story, but words and experiences show how real people live that story. So the third way we gathered information for this assessment was to interview six leaders in the disability community including advocates, heads of disability organizations and parents of children with disabilities. They talked about what they saw as the biggest problems affecting people with disabilities in Massachusetts:
- People with physical, sensory and developmental disabilities face huge communications barriers impacting every aspect of their lives – including their health care.
- When we look at health disparities among people with disabilities, we also need to examine and address disparities due to race and ethnicity.
- The health care system is inaccessible and fragmented for people with disabilities, who often have no access to medical equipment which can accommodate their disability – for instance, a woman in a wheelchair who can’t find a mammography provider near her home who can provide screening to a seated patient. These disparities in health care services can and do have a very real impact on the lives and health of people with disabilities.
As much data as this new report provides, we know that there are still populations within the disability community whose voices are not being heard. For example, our current data collection methods are not reaching deaf people and other people unable to use a standard telephone, people in institutional settings, people with intellectual disabilities, people who require someone else to answer surveys on their behalf and many others. When these people’s stories are not heard, their needs are less likely to be included in funding and policy decisions. We will need to incorporate innovative solutions to ensure that these populations do not remain isolated in our data collection.
In all, this report is only the beginning. We look forward to continuing to partner with the disabled community, advocates, health care providers and other stakeholders to take positive action towards solutions to the issues which this report illustrates. In the meantime, we are eternally grateful to everyone who responded to our survey. The insights and experiences that you shared with us are simply invaluable.
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