At present we find ourselves in an environment of fundamental change in how people experience disability services. Over the next number of years people are to move from institutions to homes in the community. The implementation of the New Directions report will radically change day services from centre-based provision to inclusive, community-based services. There is also change in how health therapy services will be delivered to children. The Value for Money and Policy Review has placed the issue of personal budgets on the table. Coupled with all of this policy change are the impending capacity legislation and the inspection of residential centres for people with a disability by HIQA. Once implemented, all these changes will have a positive effect on the lives of people with a disability. And they will be welcomed—but change brings with it uncertainty, anxiety and fear for families.
Creating strong family networks
Inclusion Ireland believes it is fundamental that families are at the core of the implementation of the recommendations of the various policy reports that are to shape service provision into the future. A well informed, united family voice needs to be part of the change process. Inclusion Ireland aims to facilitate the establishment of a cohesive and strong family voice at a local and national level.
In the past, the failure to implement visionary disability policy has left families frustrated. Families felt that their input was not fully valued or was only tokenistic in nature. However, international experience has shown that the participation of families in policy formation and implementation results in more effective services for families (for example, the family carer forums in the UK). Involving families in the formation of policy that affects them is set out in the United Nations Convention on the Rights of Persons with Disabilities (Article 4.3). The HSE has strongly committed to involving families in the development and implementation of services (National Strategy for Service User Involvement in the Irish Health Service).
For this reason Inclusion Ireland aims to empower families to take part as equal participants in the decisions that will directly affect their lives. This will be achieved through accurate, clear information and capacity-building training. The involvement of families in decision making and policy direction will be a driver of positive change in the lives of people with disabilities and their families. A strong family voice has many benefits for the person with a disability and their family:
■ Power in numbers to positively influence change in the lives of people with a disability. Together we are stronger.
■ Better informed and better connected through networking with local and regional support groups.
■ Enhanced information and advocacy at a local level supported by Inclusion Ireland.
■ More effective, community-based, inclusive services for people through family engagement in the service reform process.
A strong family input into the formation and implementation of policy and services also has benefits for the HSE and service providers.
■ Families being better informed of the changes in services.
■ Getting the family perspective on how they experience services.
■ Getting a family centred input into policy formation.
■ Being able to deliver services that enhance the lives of families.
Capacity building in families
All families need support at one time or another. Families who have a child with a disability may require an additional level of support. When people get past the initial acceptance of having a child with a disability, they enter into an alien world of service provision, special education supports, assessments, reports and welfare supports. In addition, the NDA has reported that attitudes towards people with a disability are hardening (National Survey of Public Attitudes to Disability in Ireland 2011). Health, welfare and educational supports are scarce at present. There is also the radical overhaul of disability services within the HSE. Families often experience this parallel world without support.
Inclusion Ireland addresses this through capacity-building training for families. The ‘Pathways to Possibilities’ course facilitates families to be a part of the planning for a better future for their family member. This training is run for parents by parents and challenges participants to look at the strengths of their child and plan for a good life for them. ‘Communication and Supporting Skills’ is a capacity-building program that gives families the skills to engage with professionals they may meet on a regular basis. With the support of Genio, these courses have been delivered to over 100 families in Limerick, Dublin, Dundalk, Galway and Tullamore. In 2014, there are plans to deliver the courses in further areas of the country.
Many families are not well informed on the fundamental reforms occurring within the HSE and service provision. Inclusion Ireland informs families through meeting with family support groups, holding information seminars, social media and through our publications, such as A guide to disability law and policy in Ireland. Through our advocacy work we inform people of any change and their rights in certain situations.
The Value for Money and Policy Review recommends individualisation and personal budgets as the way forward in the provision of modern disability services. This progressive move will ensure that services are person-centred and tailored to the needs of individuals, while delivering value for money. Inclusion Ireland, in partnership with LEAP Ireland, delivered a one-day seminar for families on how individualised supports and budgets can work in disability services.
A united, informed and strong family voice can have a positive effect on the provision of effective services for people with a disability. This will be achieved through the establishment of local, regional and national networks of disability support groups to facilitate the voice of families. Inclusion Ireland recognises the importance of families and their lived experiences. We support them to have a say in the services that influence their lives, through capacity-building training, information provision and advocacy support.