(Ireland) Lack of care for disabled young adults is 'living hell' for families

Aug 9, 2023, Mayo Live: Families with autistic children describe 'a living hell' https://www.mayonews.ie/news/home/1268030/families-with-autistic-children-describe-a-living-hell.html

Distraught mother says adult autistic son 'locked away'

The lack of appropriate supports and residential care for people with autism in Mayo has left two families desperately pleading for help for their loved ones this week. One young man has been housed in the Adult Mental Health Unit (AMHU) in Mayo University Hospital for almost seven months, while a young woman who lives at home with her ageing mother is struggling desperately to cope. Both families say the supports their loved ones require are not being provided.

The young man, Patrick (not his real name) is not suffering from any psychological disorder, yet has been in AMHU since January while reports were being prepared. His parents are at the end of their tether and say Patrick would be living happily at home had the proper supports been in place over the years.

The young woman, Mary (not her real name) has complex needs and her ageing mother who is her sole carer, says desperate requests for a residential care package have been ignored.

Patrick’s parents are highly critical of the service offered by the Western Care Association and say little or no support was in place for their son over the years, which led to him becoming more and more frustrated and ended up with him in a mental health unit when his only disability is autism.

“It reminds us of the ‘mental homes’ of 1950s Ireland, when people were locked away because society didn’t have the supports and expertise to help them,” Patrick’s mother told The Mayo News.

“He's autistic. He doesn't need psychiatric treatment. I understand the High Dependency Unity in the Adult Mental Health Unit doesn’t even take autistic patients as a rule because they know autism is not a mental illness. While I thank the nursing staff in the hospital for their continued care of my son, he should not be there. He isn’t ill….

New legislation

The situation appears to fly in the face of the Assisted Decision-making Act, which came into effect earlier this year. The new law protects the rights of the vulnerable and insists everything possible is done to assist people to make their own decisions about their health, finances, housing, work or personal welfare – even if there are challenges in doing so.

The distraught mother is adamant the will and preference of her son is not being met in this case and therefore the new law isn’t being implemented.

“He's utterly helpless now, stripped of his rights, living in a secluded unit of a mental health ward. It’s a living hell, not only for him but for all the family. If you kept a dog locked away for six months, animal welfare would step in. My son is not a dog. He is a human being,” she stated…..

“I am quite sure other autistic adults have suffered the same experience as my son, forced to spend months in a mental health ward until a service magically appears. Often, this service is a residential facility where autistic adults receive funding paid to a disability organisation to ‘house’ them on their own or with others. The autistic person, particularly those with an intellectual disability, may have little say in such an arrangement, which is also unlawful in my view." Patrick was attending a Western Care day service in his locality after leaving secondary school but needed additional help such as speech therapy and individualised supports.

“When these were not forthcoming, Patrick became more and more frustrated. It was so sad.

We were told Western Care would provide the appropriate services for my son so he could live a productive life but getting involved with Western Care was the worst thing we ever did.

“I had hoped, after their decades of experience they would be able to meet our son’s needs, but the knowledge, expertise and resources required to make a difference for him were not provided to the frontline staff involved.

“It wasn’t fair on them and it certainly wasn’t fair on my son. He needed simple things such as speech therapy but that never materialised and he became more and more frustrated. Like many other families we were appalled by management’s inability to provide reliable, quality services, some of which were the most basic of services where autism is concerned. I highlighted this with Western Care, and anyone else who would listen to us, but little changed.”

Frustrated

Patrick became progressively more frustrated in the day service and his parents became concerned.

“In May 2022, he was having behaviours we never saw before. It scared us and we were scared for him. We signed him into AMHU hoping that would trigger some supports for him, but we were wrong. He was released after three months because he did not and does not have a mental illness. He went back to his day service but began suffering panic attacks and lashing out which is common in people with autism who become frustrated….

“There’s a report being compiled on him now and we’re told he will have to remain in the mental health unit until that’s completed. He, and we as his advocates, are left in limbo, at the mercy of others and it could have been so different if the appropriate supports were in place for him.”

Response

Western Care replied to questions from The Mayo News by stating that they couldn’t comment on individual cases but every effort is made to provide timely and appropriate care for service users. They have no involvement with anyone under the care of the Adult Mental Health Unit.

The HSE said Disability Services Community Healthcare West are liaising with colleagues in the Adult Mental Health Unit (AMHU) and Western Care Association.

“The HSE works in partnership with organisations to ensure the best level of service possible is provided to people with a disability, and their families, within the available resources. The majority of specialised disability provision (80 percent) is delivered through non-statutory sector service providers.”

In another part of the county Mary and her mother are also at the mercy of others as they plead for appropriate residential care. Mary is a day service user with Western Care. She has high dependency needs and severe medical conditions including uncontrolled seizures. Mary’s ageing mother has pleaded for help but nothing has been forthcoming.

“Every day on the radio and television I hear voices telling me that there is so much help out there. Is that some sort of sick joke?

Struggle

“I’m sole carer for Mary and struggling with my own mental and physical health problems relative to my age. I hate to say it, but I am struggling to care for my child at my age, yet nothing is being done to help me….