Adults with Autism: Where is our future?

The transition from child to adult services is a difficult process. Parents are put on waiting lists to find that their child’s needs are not being met and left oblivious to their future.

Imagine you’re pregnant, you are overjoyed to give birth to your child. You dream about nurturing them and helping them reach their dreams and life goals. You have so much hope they will excel in all aspects of their life.

You hope they will get into a good college or get a good career so that they can support themselves while enjoying and getting the best out of life. You hope that they will always know you’re there for any support they need. For most, the care has a time limit given that when a child reaches 18 they go ahead with their own independence; that’s not the case for autism!

Adult with Special Needs are not getting their needs met, from being put on waiting lists, to having hours of care cut, to having services taken away from them simply because they reach adulthood. The Special Needs schools follow the same rules as mainstream schools in regard to the Department of Education; once you reach 18 it is time to go and that’s fair enough. What isn’t fair is that adults with autism must change their current services and start back at the bottom re-building their hours or not getting any at all, waiting.

Imagine that was not possible for your child, that for their entire life you solely had to care for them, the 24-hour watch and the lack of freedom. Your life becomes them and teaching them the ‘norms’, like how to use the toilet, how to wash, how to play a game to stimulate their minds. It’s all you, on your own, you must find services to help your child.

There are services for your child, such as special schools, respite care and carers. But you must be warned as it’s a tough battle and when your child turns 18 they will be an adult, no matter how child-like their mind is. Sharon Connolly has had to deal with problems around her autistic son since he became 18.

“Under 18s get services and when they turn 18 it’s made out as if they no longer need them, their autism doesn’t disappear so why is there no over 18 units.” Everything is targeted   for children and not so much adults. They may as well not have Special Needs anymore; the sympathy is over and the world treats autism as though it has a time limit.

Children are luckier in this scenario as they still   have school allowing their minds   to continuously be stimulated, for parents to get everyday things done and to give them a break from 24 hours watching. Services are really required for adults as they teach independence which adults must learn and without school time parents are getting less time away to keep their mental health well. A lack of these services can be quite damaging for the individual as they are stuck in the same place of learning, their knowledge needs to constantly be growing and the parent or guardian’s mental health can be at stake.

Autism is a serious disability yet people must battle for the most basic supports. The transition from child to adult brings a lot of stress to the home life. One issue is that there are not enough places suitable for adults, many services are targeted towards children and adults need to become more of a priority. Finan McGrath, TD for Dublin Bay North and Minister for State for Disability says ‘my focus has and always will be on the person with the disability regardless of their age’.

A portion of adults with autism can work and live independently, but often these services such as respite, live in care are vital as extra support. Without, they do not learn the life skills required for independent living. 5% of adults with autism are employed in Ireland. McGrath says: “Respite is one of the highest priorities for me as Minister. I realise how incredibly important it is both for the person with the disability but also for their family/ carer.”

Acquiring resources and services is challenging, even for a child with autism. It takes a lot of dedication to find the right places and takes a long time to build up the hours you get. In the carer system, some start with only 2 hours a week.

It is very important to have adult autism services available so that parents or guardians can receive a break for their wellbeing. Lack of freedom can cause one’s mind to turmoil and can have a great effect on overall health.

Parents of autistic individuals disagree that the Government’s system for special needs is working. Jacinta Walsh, mother and member of Autism Ireland advocacy group explains the value of carers getting some respite. “I can’t tell you the difference it makes getting respite, if you’re getting a break in 2 or 3 weeks’ time, you can carry on in-between, but if there’s no break ever, that’s really, really hard”.

Jacinta talks about how difficult it is to find adult services, especially living in Drogheda as there are no adult respite services available in Louth. A suitable respite centre opened near Drogheda during the summer. “It’s basically opened for business and there are respite nights available to purchase there by the HSE but they won’t buy them, the staff are highly experienced and it’s just waiting there” says Jacinta. “It’s a ready-made solution just sitting there”.

The Government’s system for special needs, like any system will constantly evolve. A system as complex as providing special needs support must constantly change and grasp to the needs of people who require services to support them in their lives.

Special needs services must adapt to cater for every disability and not be grouped together, as they often are. Respite services often group down syndrome, autistic and other disabilities together when they all have individual needs. More services specifically for adults with autism need to arise, as the child services are not suitable enough as they target different goals. The lack of respite services for adults with autism in Louth and Meath was featured on Prime Time in November.

This year’s budget will have a vital advantage for those with Special Needs. The overall funding for disability services will be increased by €75 million, bringing the overall budget for disability services to over €1.7 bn in 2018. The Government are starting to fund a pilot scheme for in-school speech and language services. McGrath says “Nobody could accuse me of neglecting or ignoring any person with a disability. Since being appointed I have progressed many initiatives aimed at improving the lives of all people with disabilities such as the National Disability Inclusion Strategy 2017-2021”.

The solution to this problem is certainly more funding but also more facilities for different types of special needs. Autistic people should be with autistic people only as it is a very complex special need. More facilities for adults need to be introduced in order to promote independence and life skills and also to give carers a break too from the constant 24/7-day week. Jacinta is clear on what needs to be done to assist families.

“Full implementation of new directions, increased access to adult respite, individualised budgets and direct payments should anyone want them would be a good start. Therapy budgets to be moved to the schools, full implementation of the EPSEN Act. Applying the Disability Act so that assessments are completed within the time limits”.

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