MDI Members Have Their Say: Survey Highlights Accessibility Gaps and Energy Costs Ahead of Disability Act Review
With the Disability Act 2005 under review for the first time in over 20 years, and growing concern about poverty among people with disabilities, Muscular Dystrophy Ireland recently surveyed members to hear about their experiences first-hand.
Thirty-five members and family members took part, representing a range of ages, conditions and living situations across the country. The findings paint a clear picture: two decades on from the Act, significant barriers remain in housing, public spaces and daily living costs.
How disability is defined — and what people don't know
Over one third of respondents do not agree with how disability is defined in the Disability Act 2005 a timely finding, as the definition of disability is one of the key areas being examined in the Government's current review.
Just as striking, almost half of respondents (49.5%) did not know they could apply for an Assessment of Needs under the Act. This suggests a major awareness gap around a legal entitlement that has existed for 20 years.
Homes that don't work for the people living in them
Almost one third of respondents reported that their own home is not accessible to them. Members described bedrooms and bathrooms they cannot use, no ramped entrances, no stairlifts or downstairs bedrooms, no hoists, and kitchen counters, light switches and windows positioned out of reach for wheelchair users.
Barriers in the community
Members also reported widespread accessibility problems in their local areas from swimming pools and cinemas to restaurants and shops. Almost one third have no accessible cinema in their area, and almost a quarter have no accessible restaurant.
The most common barriers reported include limited disability parking, heavy doors without automatic buttons, a lack of accessible toilets and ceiling hoists, steps into and inside buildings, tight spaces in shops for wheelchairs and mobility aids, poorly designed ramps, poor footpaths, and inadequate public transport and cycling infrastructure.
One member's experience stands out: "Even the hospital isn't accessible no accessibility to loo, wash area or beds in the paediatric unit, no ceiling hoist. No room to use a hoist even on the off chance there is one."
The hidden cost of energy
The survey also looked at energy poverty. Two thirds of MDI members who responded require medical equipment that runs on electricity, and over half need their heating on most days of the year. These are unavoidable extra costs that people with neuromuscular conditions face costs that must be recognised in any Government action on energy poverty.
What happens next
MDI will use these findings to inform our submission to the public consultation on the review of the Disability Act 2005, launched by Minister for Children, Disability and Equality Norma Foley and Minister of State for Disability Emer Higgins.
Thank you to every member and family member who took the time to share their experiences. Your voices are at the heart of our advocacy work.