Accessing Social Services

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You would have thought it the job of Social Services to provide the support for a disabled parent to bring up their child. There are Government guidelines to that effect sprinkled about in various bits of legislation but most Social Services departments seem to be ignorant of them, according to the Disabled Parents Network. My initial inquiries with Social Services were so off-putting that I have not pursued my case with them. But then I’m fortunate enough to have my parent’s help, however difficult I’ve found the relationship with them at times. And we’re managing to pay nursery fees two days a week. I do know of mums with ME who have obtained help in the form of direct payments to pay for an assistant or a childminder. I think it helps your case if you are already receiving care package for your own needs. So I would encourage anyone who needs help to contact the DPN who will help you get equipped to fight your case, for fight you will probably have to.

My encounter with Social Services was fairly typical, according to the DPN.

I phoned the team that deals with Disabled Adults when I was pregnant and explained my situation. I said that because of my energy and mobility restrictions I wouldn’t be able to manage looking after my baby alone all day while my husband was at work. They asked suspiciously how it was that they hadn’t heard of me before if I said I was Disabled? I explained that although I had had help from another Social Service dept for personal care in the past when my ME was at its most severe, I now could manage personal care by myself. And because I lived with my husband I couldn’t qualify for any help with housework or shopping as I had done in the past. But looking after a baby was a whole other kettle of fish.(or words to that effect) They were stumped and said I probably got through to the wrong department and should phone the children and families team.

So I did. And they bluntly stated that there was nothing they could do without a referral from my GP or some other professional. That didn’t sound right to me as I was sure you could refer yourself for assessment by Social Services. But they were so dismissive that I didn’t argue back at that point.

Meanwhile, my investigations continued via my Health Visitor, who made contact while I was pregnant. He was sympathetic and understanding about the ME and said he would make inquiries of what help was available. I heard nothing more from him on the subject of Social Services. But a year later, when Sofia was 9 months old and I was going through hell trying to cope on my own through a bad relapse I went back to him and to my GP to plead again for help. I said my total exhaustion and struggle was putting Sofia at risk and mentioned the time I forgot to pull up the side of her cot and she could have fallen out and died. M and I were desperate. My GP was very sympathetic and said they would find some way of getting me help. She delegated the job to the Health Visitor. He again was very sympathetic and said he would pull out all the stops. Social Services, Special Needs, the Education Department to get Sofia a free nursery place. He said he would make a case for us somehow. And I believe he really did try.

His response however, after all his chasing, was there was no help available. The only way, he said, for us to access Social Services care was if he were to make a statement declaring Sofia to be a “child at risk”. He said there was no nice way for him to do that. He would have to tick a box to say either that she was at risk due to emotional abuse, physical neglect or some other such category. There was no category for having a disabled parent who loved and cared for her more than anything in the world but just wasn’t managing to lift and carry her around enough or attend to her needs all day long. He strongly advised against the “at risk” register saying it would blacklist us as a family for ever and it wouldn’t provide the right kind of help.

In my paranoid moments I think that had I been suffering from MS instead of ME, even at a less disabling stage than I am with ME, the help would have been there. Either the Health Visitor would have made a stronger case or these mysterious Special Needs and Special Education departments would have had a different response. But from my contact with the Disabled Parents Network I realise that many Disabled Parents, whatever their condition, encounter the same response.

The way Social Services departments are divided up into an Adults Team and a Children and Families Team means we fall through the net. The Adults Team just doesn’t conceive of Disabled Adults having children and having parenting needs. The Children and Families Team focuses on the child’s needs due to negligence from its parents. The help I needed should have been allocated for me, as the parent, and should have come from the Adults Team, I now realise. It should have taken into account my parenting roles and the needs arising from them. And they were legally bound to assess my needs from my own self-referral. Although there is nothing legally binding them to actually provide the help I need. Knowing that we live in a needy, deprived, cash-strapped borough and that they probably wouldn’t provide help I have been loathe to go ahead and fight for my rights to be assessed for my parenting needs. But it is a postcode lottery. Some councils have more resources and many PWME have obtained direct payments to enable them to go shopping and have some social life.