Housing and disabled parents

"The most frequently identified difficulties were that housing was too expensive, that space was inadequate or that parents were unable to access certain areas of their homes."

Michele Wates – writer, researcher and disabled mother has drawn together and edited this special feature on housing for DPPi's 50th issue. She describes the huge difference that could be made to disabled parents' lives if their housing needs were suitably met.

Many disabled parents face daily difficulties in meeting their child's needs because they live in housing that is not suited to their needs.

Identifying barriers

A team of researchers linked to the Through the Looking Glass project in California in the US carried out a major survey in 1997 involving nearly 1,200 disabled parents. One or more barriers in relation to housing was identified by 43% of all respondents (Toms-Barker and Maralani 1997). The most frequently identified difficulties were that housing was too expensive, that space was inadequate or that parents were unable to access certain areas of their homes.

In the UK there have been no comparable large-scale statistical surveys or qualitative studies focused upon disabled parents and their families to back up or to refute what so many disabled parents say about the difficulties they have with finding appropriate housing. Much of what researchers have been able to tell us about disabled parents and housing has emerged incidentally out of research with a different focus such as parenting programmes, living conditions of disabled children or research on specific impairments and family life.

When Claudia Downing carried out a study of parents with late-onset genetic disorders such as Huntington's disease and myotonic dystrophy at the Centre for Family Research at Cambridge University (see article in Special feature: flexible housing solutions needed), she was interested to note how frequently dilemmas about housing came up in her interviews with parents. She also noticed that problems and barriers experienced by many of these parents as they try to get their housing right in the light of fast-changing needs are often not picked up and addressed by the professionals working with them.

An article by researchers Sapey, Harris and Stewart, based on one of the largest surveys of wheelchair users carried out in the UK, suggests that disabled parents want to be in a position to choose when, where and whether to move home. This article will appear in the next issue of DPPi.

Lived experience

This feature includes personal accounts by disabled parents Georgia, Laura and Liz which vividly underline the lived experience of the people most affected by this issue – disabled parents, their children and other family members.

These personal accounts bear out the findings of It shouldn't be down to luck, a consultation with disabled parents carried out by Disabled Parents Network (see Wates 2003). Comments made by disabled parents involved in the DPN consultation suggest that it is not only the difficulty of housing being unsuited to parenting needs but also a question of where the housing is located and delays in getting housing problems sorted out. For parents struggling to look after babies and small children these can all contribute to problems that in many cases would not have arisen at all if they were appropriately housed with adaptations and equipment suited to their needs.

"… it is not only the difficulty of housing being unsuited to parenting needs but also a question of where the housing is located and delays in getting housing problems sorted out."

Parents' experiences… Georgia: passed from pillar to post

I am a 33-year-old woman who has disabilities. I have a baby and a teenage daughter. I cannot seem to get help with housing from professionals and seem to get passed from pillar to post.

I moved to the north east of England from Kent and was sharing a three-bedroom home with my mother. We were evicted when the landlord was having marital difficulties and had to sell his home.

Because I was pregnant and classed as homeless I was given a three-bedroom council maisonette. My doctor had stated in a letter that I was not to be given a property with stairs as I use walking aids (crutches). But in the maisonette I was given, the first floor is up a flight of 15 stairs and my second floor (bathroom and bedrooms) is up another flight of 15 stairs.

The property is in a dilapidated state. The local housing authority gave me £120 in decorating vouchers. But, as a single disabled parent, who could I get to do the work for that money? The money I get in benefits and tax credits is barely enough to live on.

I can't manage the stairs all the time, so baby and I are sleeping in the sitting room. I have to pee in a bucket in the kitchen. I have to bath my baby in the kitchen sink. I would be so much better in a three-bedroom ground floor flat or a bungalow, but apparently they don't have any and I don't qualify …

So where does that leave me?

Laura: bad housing led to depression

Laura has been waiting for suitable accommodation for 10 years. She is living in a two-bedroom house with her three children who are sharing one bedroom and a bunk bed. Laura has a teenage son, a teenage daughter and a four-year-old daughter. Her two daughters share one bed, with the teenage son on the top bunk.

Laura has cerebral palsy and needs to use a wheelchair – however, the corridors in the house are too narrow for wheelchair use. She has to rely on crutches. The flat is generally run down and Laura has complained of rats and mice.

Laura is taking the council to court and is finally hoping to be moved in the near future. Her housing situation has led to her becoming depressed. Her children are also suffering because of their cramped living conditions – they lack privacy and space to do their homework.

Many houses are simply not suitable and all too often there isn't the help available for people to adapt their own home.

[Based on a real-life case study provided by UK housing charity Shelter. See Housing resources.]

Liz: inflexible system

Although I've always been disabled (visually impaired) I had an accident last year which means I can no longer walk. I have three children and we lived in a little terraced house for 22 years which, while not ideal, suited our needs adequately and was home.

Following the accident, social workers visited my home while I was still in hospital and the general feeling was that I'd have to move because my bedroom was upstairs although I have a downstairs bathroom. This meant that I would need at least a three-bedroom adapted house and they are like gold dust in the area. So I said I wanted to stay in my home with a stairlift installed, and a shower put in downstairs, and possibly have my kitchen adapted.

They got quotes for me and I discovered that I'd have to pay at least £2,500 towards the costs of adaptations because I work and earn a good wage. I also planned to adapt the back of the house to store a scooter which I intended to purchase to go to work on. I was slowly getting my life back on track, still supporting my family and starting to think it all might work out when I learned that alley gates were to be put up at the end of our back lane, meaning my scooter plans were scuppered because there was no access from the front. I was devastated, and realised that we would have to move after all.

I didn't want to wait for a council adapted home in an area where we really did not want to live, so I rented a house from a private landlord. It's lovely. It has four bedrooms so all my daughters can now live with me, and a garage for the scooter. However, it costs £700 a month which depends on me continuing to earn as much as I do now. I bought my own stairlift. Basically all I have from social services is a stool to go in the shower! It seems that the system is very inflexible so that you either get a great deal of help or you get nothing at all! But I love my new house and my scooter and having all the kids at home. So I'm happy for the moment – when I am not worrying about the huge rent I pay each month!

Names have been changed. All the experiences are real.

" Results show time and time again that it is difficult for stressed families to benefit from parenting programmes when they face multiple disadvantages, and thus policies that reduce everyday stresses in the lives of families (including poverty, unemployment, poor health, housing and education) will support parents in caring for their children."

Moran P, Ghate D and van der Merwe A. 2004. What works in parenting support? A review of the international evidence. DfES Research Report RR574. London: Policy Research Bureau. (available from DfES website as PDF)

Next: Housing resources