Connect Family Network - Survey Results

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.

Further information

Download Survey Results (2015)