In our survey to the community asking about disability supports, we asked: What Is Your Biggest Challenge?
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Your responses follow. You can still take the surveys, and share your thoughts, here:
Survey: DD Long-Term Supports, https://forms.gle/rRiWBMeLxkpDEJc88
Survey: Early Learning and K-12 Education, https://forms.gle/7jJ2L18WuCScBv5D9
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We will use your feedback to share with leaders and boost awareness of developmental disability
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What is your biggest challenge? (Responses from community survey on DD long-term supports)
"Making sure my sister is properly taken care of physically and financially!"
"Continuous funding issues are scary. Current administration is slowly dismantling the social safety net."
"Transportation."
"My daughter is a relentless attention seeker. She needs to engage constantly."
"Isolation because of coronavirus."
"Aging and Limited Supports.Finding a Good Employment Fit. Staying Healthy. Finding Good Medical Team."
"Ensuring behavioral support stabilization, and providing MPC so my son can remain at home safely and participate in the community activities. Without the supports for both, my son could not do either of the above."
"Physical activities and my right to have fun like swimming and other activities."
"Funds."
"Policies that are restrictive ... (advocates') commitment to isolating clients in individual housing when my son would do better in larger groups."
"Getting consistent staff; getting knowledgeable support providers; finding day activities that include transportation and that are long enough to make for a full day."
"Right now all is good for us but the biggest challenge is trying to get the community as a whole to understand the full continuum of support needs and look realistically at costs in order to provide those supports."
"Getting support for my family member to go out into the community for activities and socialization."
"School District staff dismissing mine and my child’s disabilities. Denying accommodations and services."
"Finding caregivers."
"Navigating medical billing and benefits; there is zero transparency on the side of private insurers."
"No respite camps!!!!!!!!!! he needs to socialize with friends. And we need a break."
"Technology for people that need it."
"Making sure employment support is maintained through this budget crisis."
"Transportation and lack of school (and later, adult programs/outings)."
"Isolation."
"Independence, emotional control, anxiety for adult child."
"Setting up out daughter for when we parents are no longer able to care for her.
"Getting help with care so we can work and make what we need to survive and support our son. Long term thinking about what he will need as an adult. Getting what he needs in school."
"Threats of decreased funding to an already underfunded agency (DSHS/DDA)."
"Getting help with care so we can work and make what we need to survive and support our son. Long term thinking about what he will need as an adult. Getting what he needs in school."
"Insufficient day program/funding options. No college or apprenticeship programs suitable for her functioning level (these programs require a high level of functioning and independence and aren’t designed for middle-of-the-road functioning levels). A stretched case manager who rarely finds or recommends anything helpful. Few housing options, especially for those with developmental disability and mental illness."
"Finding care aides, they are underpaid."
"Right now it is the fear of losing eligibility for services and what that would mean for our family ... my son losing his job and home."
"It was his health."
"Health insurance and the time it takes to get approved coverage for necessary medical equipment."
"Health; our son's Type II diabetes is unstable. The residential staff works with him to improve his lifestyle and eating habits, but it is a challenge on both sides."
"Finding personal care providers that are well trained"
"Living independently and connecting to the community."
"The world is not designed for a person in a wheelchair to access; our system leaves out individuals age 10- 18 with disabilities that do not result is severe cognitive deficits and they need support too."
"Delays and red tape in accessing needed services."
(Responses as of August 24, 2020)
