Hi, would anyone be able to give us some advice?
We have an adult daughter in a care home who has a ASD diagnosis and a learning disability.
The care home and carers in general have been great, but in the last year or so we feel we are not being told about, or being invited to attend meetings (such as medical reviews, social worker visits, and psychologists meetings). We now often find out about meetings after they have happened.
We are our daughters financial and Dols representatives and a big part of her support network ( we visit and talk on phone regularly). When she entered adult services we were told we would be included as part of her best interest team, and could advocate for our daughter if she asked us to, and be included in discussions regarding decisions beyond her comprehension.
Before Covid we were always included on these things and had good communication with the senior leadership at the care home. but some of the staff structures and personnel have changed and unfortunately we now feel sometimes we are being forgotten and/ or our views are being disregarded.
When we have raised concerns we have been told some of the meetings have been last minute so there wasn't time to inform us, and also as our daughter is now an adult we do not have any need to attend. We feel we will always attend meetings where we can to support our daughter if she wants us to be there, and can give good historical information about her. Our daughter always asks why we didn't attend a meeting and we think she would rather we were there if we could be.
We will raise this with the care home again, but could anyone give any advice who has experienced anything similar or know any good way to get across to the care home that we feel as parents (and part of the support network) we should be included?
hope that makes sense thanks for any replies