By Jen Fookes. Mum.
The gap being the divide between them and us. The parent carers and the professionals.
Some professionals bridge this gap really well with open arms and enthusiasm. Understanding full well the benefits and it’s just the right thing to do. Others unfortunately still do not. I still see many battle weary parents seeking support. When trust and faith have been lost it can be devastating for families. “The mother who was strong, broken” expressed this in an earlier blog post in a very hard hitting way.
So why the gap? My thoughts.
Historically there has been a cultural intolerance to people with learning disabilities. Superstition, persecution and rejection. Even entertainment in the form of freak shows and the village idiot. Things may not be as extreme today but we still feel its presence.
Historically our children would have been shut away.
Many would say they still are.
Historically our children would have been inhumanly left to die.
Many would say they still are.
These statistics from Mencap are shocking. They are only some of the very very basic needs that families are asking for, and why we get described as difficult.
Some professionals still do not see family carers as an important part of their child’s life when they go into the system. They don’t understand a parent’s journey in todays society. They don’t always spend any time with us to get to know us as people. Just an hour in a review once a year. Parents can be blamed for their sons/daughters behaviours. As families we can be labelled as dysfunctional. Jargon is still used so we don’t always understand. Professionals focus on legislations, procedures, guidelines etc families values and feelings don’t always get a look in.
And with on going cuts to the health and social care systems seemingly targeting the most vulnerable in our society. It makes me feel my son is not a valid equal member of our society. And without real working together neither am I.
Sometimes it feels like there is deliberate exclusion, tokenism and lip service towards parent carers. And still many assumptions are made. Systems are not always family friendly. Emotional manipulation, passive aggressive ways and carefully veiled threats are still used as a show of power.
For those families who want to stay involved a family-centred practice would be a great way to work together. Studies show when families are viewed as important then there are better outcomes for the child/adult which benefits everyone.
So even though there may be a cultural shift in the way some professionals work it is still a postcode lottery. Many parents now want more than just to be informed or consulted. We need proactive collaboration as a matter of course not just seen as good practice, for those families who want to work alongside proffesionals in valued working relationship.
And maybe if society sees parents and professionals working together positively with people with learning disabilities then as Learning Disability England says;
Stronger, Louder, Together.
Change will happen. Isn’t that what we all want?