I along with my Oireachtas colleagues on The Joint Committee on Disability Matters today, Thursday February 23rd published its report on Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
The UNCRPD specifically requires the consultation and active involvement of people with disabilities and their representative organisations in decision-making processes concerning issues relating to them.
The Committee found that access to mainstream health services is severely impacted for people with disabilities in Ireland due to inaccessible services, a lack of expertise, therapies, and individualised services as well as a significant cost of disability and a lack of disability awareness training across all areas of the service.
Disability Services, which deal with more complex disabilities, has a broken organisational structure that impacts transformation of a service, and is based on a medical approach to disability, sustains segregation through a lack of mainstreaming early intervention, and ultimately impacts the rights of people with disabilities under the UNCRPD.
“Urgent action is needed from Government on Disability Services to ensure the rights of children and adults with disabilities are upheld in line with the UN Convention on the Rights of Persons with Disabilities (UNCRPD).”
“Government crisis talks must be undertaken to ensure action from all relevant actors. The Committee heard about the crisis in children’s disability services from parents of children with disabilities, including parents who were forced to form advocacy groups because they were not receiving early intervention. Parents experienced significant distress watching their children regress as a result of a lack of early intervention.”
“Parents were forced to impact their privacy and dignity by engaging with the media to tell their personal stories to raise awareness and access services. There is also a significant range of court-cases taken against the HSE where parents are advocating for the rights of their children to access services. A crisis of culture, recruitment and retention exist in Disability Services.”
“There is significant capacity for transformation in line with the dignity, will and preference and rights-based provision of care as outlined by the UNCRPD. The Committee also heard about the crisis in adult services. Adults residing in disability residential centres have a lower quality of life where their rights and will and preference are not respected.
“Access to advocacy and rights-based person-centred planning must be developed to support people, as well as programmes to deliver independent living. Better access to community and rehabilitative supports is needed, as well as mainstreaming disability under Sláintecare.”
The report calls on the Government to undertake crisis talks on national measures to support transformation of Disability Services to ensure the delivery of early intervention across health services for people with disabilities including; a) a targeted focus on ensuring human rights to individuals living in residential settings, b) integration of adult services as part of Sláintecare and standard access to services in the community including mental health services c) access to early intervention in Children’s Disability Services and mental health including better coordination between health and education d) development of recruitment and retention of staff in Disability Services
The Committee calls on the Government to undertake a review and provide a timeline for alignment of all relevant legislation with the UNCRPD that includes an intersectional approach and repeal all legal provisions that legitimise non-consensual psychiatric treatment on the grounds of perceived or actual impairment and establish a monitoring mechanism to ensure that persons with disabilities are not subjected to forced treatment and have access to the same range, quality and standard of health care on an equal basis with others.
The report makes several recommendations, under the following headings – rights-based disability services provision, community-based health services and support, children’s disability services and future innovation.