A new model of service provision for young adults with disabilities was outlined by Minister of State Kathleen Lynch at an information evening in Meelick
recently. Dan Danaher reports

CURRENTLY providing funding to agencies such as the Daughters and Brothers of Charity for services and supports for people with disabilities and their families, the Government is planning to change this to a system where families and people with disabilities have a say in where their funding goes, under the term ‘individualisation’.
In her opening address at the Facing the Future, Individualisation information evening at the Radisson Blu Hotel in Meelick, Minister Kathleen Lynch outlined plans to move towards a new method of providing care that gives more choice to people with disabilities.
Under the new plan, she explained service users would be given more input and control over funding allocated for their care, while service providers would no longer decide what is best for the service user.
New legislation will be required to recognise that the majority of people with disabilities have the capacity to make decisions for themselves.
“At the moment, if you have a disability, it is automatically assumed that you have no capacity. Things are decided for you and you will not be consulted in terms of your medical needs, whether or not you need an operation or even something small as not wanting a tooth pulled. It doesn’t matter; somebody else will make that decision for you,” she said.
The minister confirmed that a value-for-money audit on providers of disability services would be completed by the end of the year but stressed this doesn’t necessarily mean these organisations will face cuts. Instead, she claimed the department is looking to see if better use can be made of existing resources.
Out of the €14 billion health budget, she noted mental health services account for €1.5bn, which does not include the Department of Education and Social Protection and other departments’ disability funding.
“If I have a disability, which tells me that I am not mobile and I am quite dependent on somebody else to help me with my everyday needs, I might not want to go to day services every week.
“I might like to go to the pub instead. I might like to go to a rugby match. I might like to go to the park. Why shouldn’t I have that choice and why shouldn’t I have the choice in terms of who I get a service from? It is my intention that they will live as independent a life as they possibly can,” Minister Lynch added.
The benefits of the new model of care were highlighted by a broad group of keynote speakers, including family members and a self-advocate, who shared their stories on how and why they have introduced aspects of Individualisation and how they are doing things differently. They included Séamus Greene, director of National Parents and Siblings Alliance a father from Dublin and Lisa McNabb, a self-advocate from Wicklow who, with her assistant Theresa, gave a presentation on how she achieved her dream to live independently. Nora Johnston and Thecla Farrell from Clare described how life has changed for their loved ones since they introduced Individualisation, while Catherine Finneran, a mother from Sligo, spoke about the journey she travelled with her son.
According to one of the organisers of Mid-West Parents, Emer Sherry, mother of a child with cerebral palsy, “The event stemmed from the lack of knowledge that people have on Individualisation. The Irish Government is changing its policy in the disability sector towards this new model of Individualisation, so it is critical that people are aware of how it will affect them.
“Individualisation is not just about money and it will mean different things to different people.  It gives individuals with a disability, and their families, the option of getting involved in decisions about the services and supports they receive and they can have a say in how funds can be directed to achieve their goals,” she said.

Questions still remain about new scheme

ONE-third of parents who participated in a survey about a new model of care for young adults with disabilities have questioned how the new scheme will be administered.
In total, 134 parents, carers and representatives from disability organisations and providers from Clare, Limerick and North Tipperary, out of a registered attendance of 214 participated in the survey, following a presentation about Individualisation at the Facing the Future information meeting in the Radission Blu Hotel, Meelick recently.
Nine out of 10 respondents, whether positive, neutral or negative about individualisation, expressed concerns about the model. Of these, 33% were worried about the administration of individualisation, the guidelines to be used and how will it work. They asked what family supports are required, what rules and criteria will be followed as well as what safeguards, legislative and other, will be put in place.
Up to 17% felt it was asking too much of families and, in some cases, respondents felt the HSE and the State were “opting out”.
Another 12% felt there is not enough information available on how this would work and that it is too early to tell whether it would be a good approach or not, while 9% felt it wouldn’t be suitable for every person with disabilities.
Queries about how the new policy would work after parents die or the circle of support dwindled away over time was raised by 8% of participants. The findings also revealed 7% worry about not having enough family members or family support to make circles of support work, 7% fear that its implementation would be too far into the future and another 6% wondered if funding would be available to make this work.
A very small number, 1%, were concerned about the potential social isolation of people with disabilities in this new model.
An analysis of the respondents showed 78% were family members and 22% were service providers.
Of the family members who responded, the family member with a disability lived at home in 75% of cases; 4% lived in a house with others with disabilities and 8% lived in a residential setting.
Just over half were positively disposed towards the idea; of these 20% were service providers and 80% were family members.
It found 26% could be said to be neutral in that they stated concerns but weren’t explicitly positive; of these, 29% were service providers and 71% were family members.
However, 17% were explicitly negative towards the idea; of these, 13% were service providers and 87% were family members.
Commenting on the report on the Future of Disability Policy, Emer Sherry from Mid-West Parents said while it claims to put people with disabilities and their families at the centre of the process, there is no obvious structure to ensure they are included in the development of an implementation plan arising from this policy. 
“We are worried that other stakeholders in the process, such as existing service providers, will ‘own’ and control the implementation plan. We could end up with a plan that suits service providers and not people with disabilities and their families. 
“We also worry about how individualised supports will work on a day-to-day basis. Will there be flexibility in funding as people’s needs can change from month to month and year to year?” she asked.
Ms Sherry encouraged people with disabilities and their families to submit their opinions on how individualised supports should work to Minister Kathleen Lynch before Friday, November 4 to neil_waldron@health.gov.ie.