They're Not The Priority But What Would You Do For The Carers?

Not sure what you are referring to, so I'll make some general comments.

Social care packages in the UK would include referral to specialist daycare and respite where it is available although the provision is patchy throughout the UK. They would also include assessments for provison of statutory services, home-helps, personal care assistants, meals-on-wheels, equipment needs etc. This might be a UK/US terminology difference?

I think that the ECP showed respect for the circumstances of those individuals caught up in those cases.

I'm reluctant to use personal examples or to ask you to comment further on your personal circumstances. So, in general, in cases that resembled yours in degree of need - what would you think affordable daycare would look like? What would be the level of provision, ratio of nursing and care staff, number of hours per day, etc. and at what price would it be affordable? Should the contributions be scaled according to income - how would this be done so that it didn't penalise people for working?

In the UK we have a system of allowances, some of which are means-tested and others that are not. Similarly, we have allowances that are withdrawn, pound for pound above a certain level of income, or above a set number of working hours.

Although it is very patchy, we have a variety of schemes in the UK that are appropriate to different levels of need. E.g., in my county Help The Aged has a network of hostesses that host up to 5 elderly people to lunch. The guests arrive during the morning, they socialise and share activities. They have a lunch and then spend some of the afternoon together before returning home. A local area provides after-school care for children with disabilities that converts into day-care during school holidays. They also provide other services for children who need more intensive care.

Some of the issues that you raise in relation to yourself are similar to the ones that recently led Carers UK to question whether carers are being deprived of their Human Rights according to the european legislation on this topic.

Best - Tony Happystance

Tony,  First, let me apologize for the tone of my letter and thank you for your kindness in your response.  It was appreciated.

In my comment, I was referring to the types of things that I felt were needed in the U.S. and not the U.K. which I had thought that my reference to the U.S. might indicate.  In my haste, I did not do a very good job of answering your post very well or very eloquently; it was just that this issue is so close to my heart.  In the U.S., there is so much that needs to be done and yet doing one thing right, such as daycare, would have such a profound impact and help so many Carers and their loved ones.  In the U.S., we have a lot of programs that are well meaning but really are ineffective or don't reach their intended audience.  I can't tell you the number of times someone wants to share another "program" that just misses the mark.  When I speak to other parents of disabled children, they feel the same way, that there is a lack of support or understanding for our lives. 

Our lack of daycare in the U.S. means I have to choose between taking good care of my child or working full time and putting him in a facility that could care for him, an option I am unwilling to do.  I have been in many hospitals and have seen first hand the mistakes that are made and I don't feel I could trust anyone to take of him. At the same time, it can be exhausting work and I worry about the present and the future.  Once my child dies, I can then return to work and start saving for my retirement.  Living the life of a Carer is a rough one and you seem to have caught me on a particularly hard day.  I live a life of poverty though circumstances and one that I would trade in a heartbeat if I could find some daycare that could take care of a medically fragile child/young adult.  I have searched through every organization for resources only to come up empty handed.  The response is always, yes, we know it is needed but we can't figure out a financial model to support it.  Often times, the cost for caring for the disabled would be five to ten times what a regular daycare would cost and then there are state/federal regulations where they need to have a nurse available at all times which further drives up the cost.  In my child's school system, there are a lot of disabled children, none of whom parents are able to secure daycare.  I raised the question one day to the Special Education Co-Op in my area, that if daycare were available, what percentage of parents would take advantage of it and the figure was 75%.  I wish I didn't have to choose. I should clarify too, that I do work part time to help make ends meet, but that is a menial job and I make less than 20% of the salary that I am able to command when I work full time. 

My frustration is further compounded by the advances in medical technology that enable us to save more children, even though they often can have some significant disabilities.  I certain applaud that however I feel if we are going to do that, then we need to be responsible as a society and provide resources (such as daycare) to allow us to care for our children with dignity just as other parents do.

I also want to make perfectly clear, that it is never the "life" that I care for that makes this hard, it's the "lifestyle" that is difficult.  I love my child and love being able to take good care of him.   

Once again, I apologize for my tone and do appreciate everything you do. I thank  you for opening up this topic for discussion and only wish here in the U.S. we were as advanced as you appear to be in the U.K. 

By the way, I love your blog.

Thanks for the warm note and the kind words about the blog, it is appreciated! As is your generosity in sharing your experiences.

You highlight a remarkable disconnect between the social support for medical interventions that save the lives of people with significant disabilities, but falls short on the provision of appropriate and adequate resources that would give a quality of life to them and the people who care for them.

I am very taken by your distinction between the difficulty lying with the associated lifestyle of being a carer, rather than the life that you care for.

Take care - Tony Happystance

I agree. A long time ago, and in a different context, my wife suggested that we need a volunteer programme of information brokers. People would be able to speak to information brokers who would then look to identify sources of information and appropriate support. The brokers would have good access to local caring for carers services and would be able to tap into their local knowledge as to which associations are available and likely to fulfil needs.

Perhaps the brokers could be part of a Carers Advice Bureau along the model of the Citizens' Advice Bureau. It might be able to borrow staff from local councils, social service departments etc. to provide appropriate formal advice. Maybe it could offer information events over tea and biscuits. I know this sounds trite but sometime ago I read about a very successful programme in the US that relied on church members to disseminate a healthy heart message (or some such). There is a lot to be said for the value of peer-to-peer communication.

Maybe it would be more feasible for ambulance crew or E.M.P.s to carry cards for the local information broker service or Carers Advice Bureau? Or maybe a default follow-up to a call-out might include an leaflet or card?

Medical staff are already hard-pressed to spend time with the people who need it. But I do feel that there has to be a practical way to give appropriate time to the people who need it so desperately.

Tony Happystance