The National Federation of Voluntary Bodies, providing services to people with intellectual disability, has a number of key messages to all intending candidates for national elections:
- Throughout the years of economic austerity, people with intellectual disability have been disproportionately adversely affected as there has been little or no investment in the sector since 2008.
- In the period of economic recovery now being experienced in Ireland, it is imperative that we prioritise those who have been significantly disadvantaged.
- Significant unmet and changing needs exist for people with intellectual disability: Addressing these needs requires total political commitment and substantial investment.
- All mainstream national programmes such as the Social Housing Strategy 2020 and the action plan for jobs must identify a specific proportion of the budgets allocated to these programmes to meet the needs of people with intellectual disability.
- As a sector we are committed to the implementation of national disability policy and all statutory regulatory requirements. However implementation requires strong political will and substantial investment.
- We call on all political parties and election candidates to re-commit to the national disability strategy in their election manifestos.
- We call on all political parties and election candidates to commit to ratification of the United Nations Convention on the Rights of People with Disabilities.
Three personal stories which reflect the impact of the austerity measures and under-investment on the lives of people with intellectual disability and their families over the period 2008 to date.
JOHN – 8-YEAR-OLD CHILD WITH COMPLEX NEEDS:
John is an 8-year-old boy from Cork. The needs of this child are very complex, including developmental issues, emotional and behavioural difficulties, sleep disturbance and medical issues. The family have been under huge strain for a long period of time and are requesting additional support in the form of regular respite and 8-10 hours per week home support. It is difficult to access supports for children like John, due to reductions in respite, together with long waiting times for early intervention supports, and this is placing extra emotional and financial pressure on the family.
MICHAEL – YOUNG PERSON LEAVING SCHOOL:
My graduation ceremony was one of the best days of life. My family, teacher and my best friends, celebrated with me this exciting move from my school days. My teacher and particularly my two class helpers have always been there for me over the last number of years and with their help, and the help of my family, I have achieved a lot of things in my life that some people thought I could never achieve! I have great difficulty communicating how I feel so I hope they know that I will really miss them a lot.
Change is exciting, but very difficult for me. So, I and my family will need a lot of support as I set out on a “New Direction”. People have told me a lot of exciting things about New Directions and what it means – participating in my local community, further education, help with getting a job and developing my creative side. I love art. I’ll be just like Mam & Dad and big Sister – I’ll have a real role in my community and set my own goals for my life – who wouldn’t like that?
My sister was able to do a lot of these things on her own and with some help from her friends and our family, but I will need a lot more support. I need my own paid support workers to help me make my choices and do the things I need to do. You see I have what some people call “intensive support needs”. For me, this means that new situations really frighten me. I find it very hard to be with people, to be friendly. I don’t like to talk much. I like routine. I like familiar things, people and places. I like a daily plan. I don’t like noise. I get very frustrated at times and can get angry. I really don’t mean to upset or hurt people. When it happens I also get upset and need help to calm down. I need help to learn. If I don’t have support workers, not for all the time, but for some of the time, I can’t begin to find my place in my community. I’m afraid of what my future will be like if I don’t get the support I need. Mam and Dad have fought all my life for everything for me and they still have to fight. That’s not right or fair. Like me, they are getting older. I know that if I don’t get my support workers it will be difficult for me to stay living with my family. That frightens me. Am I valued as an Irish citizen? If so, why can’t I have the same opportunities as my Big Sis?
MARY – AN ADULT WHO REQUIRES A RESIDENTIAL PLACEMENT:
Mary is a 51 year old lady who has a diagnosis of Downs Syndrome and a moderate intellectual disability. Mary is a very sociable lady who enjoys the company of others and attends a day service Monday to Friday. Mary lives at home with her elderly mother aged 83 years. Mary’s mother was diagnosed with early stage Dementia in 2012. Mary’s mother reported being concerned about her daughter’s future care in 2006. Mary has 4 siblings, only one of whom lives in Dublin like Mary, however, none of her siblings are in a position to care for her. They believe a residential placement is the most suitable option for Mary.
Mary continues to live at home with her mum whose dementia and health have been steadily deteriorating, with a significant decline in 2014. Mary’s mother has been struggling to support her daughter with personal care particularly in the morning, resulting in Mary often not being ready for the bus collection to her day service and therefore missing out on the opportunities and social outlet her day service affords her.
Mary and her mother benefit from the support of a home care package, respite breaks (which have significantly declined in the past 3 months due to the demand on resources) and a respite break with a host family one weekend every 3 months. Given the deterioration of health needs of Mary’s mother, and Mary’s own increasing level of need, the support in place is still not adequate to maintain Mary safely at home. Mary’s siblings have advised recently that their mother may need to go to a nursing home in the very near future and therefore the family urgently require a residential placement.
Reprinted by kind permission of the Federation of Voluntary Bodies