The ALS Association is pleased to share the results of the 2016 Care Services Community Survey. Below we offer some background on the survey and highlight a few significant responses. We also provide information on how you can give additional feedback on The Association's programs in September.

Background

In July 2016, The ALS Association invited members of the ALS community (defined as people living with ALS, family members, and caregivers) to participate in a community care services survey. This survey included 15 questions and was shared via several of The Association’s communication channels. Nearly 800 members of the community responded.

Providing multiple opportunities for people living with ALS to comment on our work is vital, and the insights gained from this survey will be combined with the results of our ongoing series of Listening Tour meetings with the ALS community. We will use all of this information to inform strategic planning, help identify and prioritize program initiatives, focus on potential program improvements, and contribute data and information for advanced decision-making.

Survey Highlights

When asked what programs they have accessed through local ALS Association chapters, 52 percent responded that they have utilized an equipment loan closet. Forty percent visited a certified center or recognized clinic, 34 percent accessed a support program, and 31 percent received an education service from their chapter.

When asked which areas The Association should be devoting more care services resources to, more than half of respondents chose assistive technology (58 percent) and home health benefits (52 percent). Thirty-nine percent chose programs that support increased access to care and services, while 36 percent wanted more resources related to Medicare, Medicaid, and veterans insurance programs.

Thirteen percent of respondents also indicated that finances, costs, and/or insurances make up the greatest challenge that they and their family face. Other significant challenges include accessing home health benefits (10 percent) and equipment loans (nine percent).

For more information about the survey, including responses for all questions, read the full report.

Another Opportunity for Feedback

Did you miss the chance to take the Care Services survey? We're providing another opportunity for the ALS community to give feedback during our second "virtual listening tour" on September 27, 2016 from 1-3 p.m. EDT.