We asked. You responded.
In 2015, 73 local disability support groups representing over 5,000 members countrywide told us.
Why parents and siblings join a local disability support group:
● To connect with other parent and families 88%
● Social events for people with intellectual disability 66%
● Provides or subsidises education or therapies 45%
● Support and advocacy to access local services 38%
The No. 1 issue for persons with an intellectual disability
● Access to health services 83%
The No. 1 issue for family members
● Lack of support for families 34%
Consultation with the HSE and other service providers
Just 6% of families were satisfied
They were happy when
● Concerns were acted upon,
● There was an outcome
● There was a result.
But 57% were dissatisfied
● Consultation was tokenistic (ticking a box),
● It was futile due to lack of funds,
● It was based on policy not reality (no implementation)
● They were not real partners in the process.
Families ask about
- “New Directions”
- Assisted Decision-Making
- A congregated setting
- The Value for Money Report
● Between 70% and 90% of family support group members were not familiar with many key policies and changes to laws that affect their lives
● 52% said information about important law and policy is not communicated well
Families asked for
- Email updates,
- A dedicated webpage and
- Training to inform and support your local family support group.