A Summer Holiday Surprise For Learning Disability Carers

When Linda lived at home with Mum & Dad, she lived with them all day, every day. She was loved to pieces and given every opportunity they knew how. Since Mom & Dad died, I’ve cared for Linda and three major things have changed.

1) We now have a positive FISH test diagnosis that confirms Linda does have Williams Syndrome.
2) I need to go out to work so Linda doesn’t have the option to stay home all day.
3) Linda moved home to a much larger town and has access to a wider range of learning disability support services.

I think Linda is overjoyed that she has these new opportunities.

During the week Linda engages with a range of activites supported by a stream of Care Workers, some very specifically educational or developmental, some purely for pleasure. They are administered in a diverse collection of ways that I am finding increasingly stressful to manage but I suspect to Linda is blissfully unaware of this.

Linda enjoys her activities, math classes, craft workshop, dance class, swimming session… As an observer I can see which days seem to energise her, when she is really looking forward to an event or to an activity. Verbally when questioned, Linda likes them all.

Over the summer things have been a little different as many of the educational activities take a longer summer break. Now this is my first time round with this system. I know schools take a long holiday but can’t quite see how this fits into the support system for adults with learning disabilities. It’s not as if all parents or carers have equally long holidays and, if you need that break to go to work or just keep your sanity, that doesn’t change over the holiday period.

The good news is that Linda is still collected each morning. The bad news is that many of the usual classes and workshops don’t run.

Different organisations and individual Care Workers have responded to this challenge in different ways. Some have been great while others seem totally unprepared for this change.

Linda has enjoyed some unexpected visits to local sites and beauty spots. Fantastic! This has combined fun with an activity that was both educational and energetic. Win, win, win.

Other workers have managed to spend two hours wandering round a supermarket with nothing to shop for and seem surprised when Linda then keeps asking to buy snack foods from her forbidden list (Duh!). This almost strikes me as sadistic.. not done intentionally of course but who would choose to wander round a supermarket when there was no shopping list, nothing to buy? Oh yes, I could have provided a shopping list. I even thought about giving the opportunity to buy food to prepare lunch, but any purchases then have to be carried around for the rest of the day as Linda is walked around town until it’s time to come home.

I do wonder about a system where schools are closed for six weeks and for the most part remain empty and unused. And people who used to go to class have nowhere to go and nothing to do? How difficult can it be to organise a different summer programme?

I know people do want and need summer holidays but our vulnerable adults still have care needs and someone is still being paid to care for them… so why are they being paid to walk around supermarkets rather than have a music workshop, story-telling or creating a diary session? The resources required would be minimal and many would already exist in our locked-up school buildings.

Or am I missing something fundemental?

How does holiday provision work in your area?

Can anyone share some examples of good practice that I can use here?