Jointly funded care package

As a disabled parent with a one-year-old daughter, I’ve had social services needs assessments from both the adult team and the children and families team in the London borough of Lewisham, with mixed results.

I have quite bad arthritis, mainly in my back, although it has started to affect my hands and feet too. This gives me mobility problems and fatigue related to inflammation. I also have psoriasis.

Before becoming a parent, I had never had any involvement with social services for my own personal care but I approached them for a care assessment towards the end of my pregnancy as I knew I would need support. Several weeks before my due date, I left my partner and moved into a hostel so it was a difficult time.

I received a letter from the assessor explaining that the adult team and the children and families team would jointly fund a care package.

The main reason that I approached social services for a needs assessment was to enable me to bath my baby. I’m unable to use a baby bath as I cannot carry it with the required amount of water in it, nor can I lean over a standard bath. I did try it once and I was in a lot of pain the next day.

Ping pong

Despite the fact that I approached social services several weeks before my due date, I was not allocated a social worker until six to eight weeks after the birth, and I didn’t get any care at all until my daughter was five months old.

At first, I was ping-ponged backwards and forwards between the adult team and the children and families team, with both stating that support for parenting needs was the remit of the other team.

Eventually, two months after my daughter, Rosie, was born, I had a needs assessment with a social worker from the adult team. It was a terrible assessment with the worst social worker that I’ve ever come across.

I had prepared a list of tasks that I found difficult and needed support with but I never managed to get through my list. The social worker dominated the conversation, talking about her own experiences as a single mother. She asked me “Why aren’t you working?” I was appalled at all her inappropriate comments and questions.

I complained to social services about the delay in assessing my needs and the fact that I was still not receiving any care. I didn’t get a response for ages and then, eventually, I received an email with a care plan attached.

The care plan contained wildly inaccurate information – it was clear that the social worker hadn’t listened to anything I’d said to her. Basically, it said that they couldn’t provide anything to support me with my parenting needs as they were only responsible for looking at my own care needs.

Making a complaint

After Christmas, Rosie had got a lot heavier and I could only manage to give her a bath once a week. It was then that I contacted Disabled Parents Network (www.disabledparentsnetwork.org.uk) for help. They gave me information on my rights and supported me to make a complaint. Armed with this information, I wrote a complaint letter to social services stating that I needed support in my role as a parent.

Eventually, the adult team decided to get the children and families team involved. An initial assessor from the children and families team came out to see me without any input from the adult team. Even though I’m aware that the adult team should have been responsible for assessing parenting needs, I have to say that I had a much better experience from the children and families assessment.

Of course I had the same fears as other disabled parents about the children and families team getting involved. Nobody wants their child to be thought of as ‘in need’. There is always the worry about your baby being taken into care.

However, the children and families team was definitely the better team on this occasion and I found the chap who came to see me really supportive and professional. He listened to me and took notes. He reassured me by saying that he could see that Rosie was obviously being looked after very well. I felt very secure – my parenting ability wasn’t being questioned at all.

Joint funding

I received a letter from the assessor explaining that the outcome was that the adult team and the children and families team would jointly fund a care package of 10 and a half hours a week – seven and a half for Rosie and me, two hours for cleaning and one hour a week ‘spare’, which I can ‘bank’ and save up to cover emergencies and unexpected needs.

I receive direct payments but I didn’t want the hassle of employing someone so I hire staff through an agency. The solution for bathing we have now is that the carer comes in and I run a bath for myself, then she brings Rosie in and we have a bath together. The carer gets Rosie out, dries her, puts her nappy on, dresses her and feeds her while I put the cream on for my psoriasis. This arrangement works well for us.

I was also allocated a very supportive female social work assistant from the family support and intervention team who comes to visit us every six weeks to see how we are doing. It’s the little things that make a difference. For example, I was having trouble finding mother and baby groups and the assistant gave me a list, which was very useful.

The children and families social worker reassured me by saying that he could see that Rosie was obviously being looked after very well.

I have experienced a few problems with the direct payments scheme. A third-party agency manages the direct payments scheme. They are supposed to be independent but they are appointed by the local council and seem to work as gatekeepers. They seem to operate on a basis of mistrust of people who use direct payments.

In particular, they were very suspicious when I used some of my direct payments with a cleaning agency rather than a care agency, despite the fact that my care package included two hours per week for cleaning. They refused to pay the cleaning agency and I had to go back to the social worker to resolve the situation.

Moving forward

I have recently developed carpel tunnel syndrome from all the lifting that is involved in baby care tasks and, ideally, I do need some more support. However, I’m just so tired that I’m not sure I’m ready for another stressful battle. I haven’t had a review of my care plan yet but perhaps this will be the opportune time.

My advice to other disabled parents seeking support from social services is not to be afraid of making a complaint. In my case, it was the only way that things moved forward.

First published DPPI Journal, Issue 68: Spring 2010