Increasing Disability Literacy to Enhance Patient Outcomes

Background: Disability literacy is the ability to obtain/understand information regarding health, finances and resources to adapt to, anticipate and overcome challenges resulting from a chronic illness/disability. Understanding programs such as Social Security Disability Insurance (SSDI) is critical in ensuring individuals can make informed decisions and take action to improve health and financial well-being before and/or after work is no longer possible.Individuals with MS are among those most often denied SSDI benefits, yet subsequently awarded at the hearing level.Qualitative and quantitative data illustrate common experiences and consequences of job and health insurance loss during the wait for SSDI benefits.

Objectives:

1. Define disability literacy
2. Understand function, benefits and process of the SSI/SSDI programs,especially as it relates to persons with MS
3. Identify the stressors/negative outcomes associated with the SSDI process
4. Identify strategies and tactics to increase disability literacy and alleviate/avoid those stressors among individuals with MS who can no longer work

Methods: SSDI Claimant Experience Survey based on responses from 296 individuals to a mailed survey. The survey was sent to individuals awarded SSDI benefits sometime in the past three years, with Allsup as their third-party representative, after first applying for and being denied SSDI benefits on their own. The survey was conducted by mail between June 29 and Sept. 4, 2009.The NFCA/Allsup Family Caregiver Survey was an online survey of 1,579 Family Caregiver members of National FamilyCaregivers Association who subscribe to the organization’s E-letter. Surveys were completed in March and April of 2011. Richard Day Research, an independent market research firm, was responsible for data management, analysis and reporting. The SSA Inspector General analyzed data from calendar years 2004 through 2006 to identify the four impairments most often denied SSDI benefits, appealed to the hearing level, and subsequently allowed.

Results: A majority of SSDI applicants experienced financial crises, extreme stress and declining health during their wait for benefits.  About one third lost their health insurance. Most patients and caregivers look to physicians for disability-related resource information, but providers report they have little knowledge of disability resources/programs.  Individuals with MS are among those most often denied benefits at the application level and subsequently approved at the hearing level.

Conclusions: Increasing disability literacy among providers and patients can have a positive impact on provider-patient relationship, patient satisfaction, patient well-being and outcomes. Access to expert assistance with SSDI and other disability resources early-on can help alleviate or avoid stressors, speed access to benefits, including Medicare and minimize or prevent lapses in health insurance coverage.