Flexible housing solutions needed

“Systems need to be in place so that [the authorities] can respond in a flexible manner that upholds family life rather than ignoring the fact that an adult who has a progressive medical condition may also have parenting responsibilities.”

Claudia Downing is Wellcome Trust Postdoctoral Fellow at the Centre for Family Research, University of Cambridge, UK. Here she explores the importance of appropriate housing and the need for flexible solutions.

Constraints that parents have encountered in relation to housing include timing mismatches; being treated as individual patients rather than as parents with responsibilities to their children; juggling limited tenure in adapted council housing with meeting children's needs; not being able to take out a mortgage after testing positive; emotional barriers; and safety issues.

Some examples are presented below which illustrate these points – and show how parents have complex reasons for wanting to change housing. All names have been changed to protect participants' confidentiality.

Susan

Parents make skilled judgments about wanting to change housing at a particular time. Susan, a single mother of two children, had tested positive for Huntington's disease. She wants to move to a bungalow or ground floor flat in the same area before she becomes symptomatic in order to be with people who know her, will understand what her symptoms mean, and who would be supportive to her and her children.

"My hope is … there'll be less judgment; there'll be less fear, so therefore there'll be less for them to have to face. … If they wait until I'm ill, and then move me and the children to somewhere else, they've got to start all over again with people that don't know me as I am now."

In reality, her choices are limited. Her positive test result means she can't get a mortgage and move into the private housing sector. Although she is now on a special housing register because she will develop a known illness, the council's limited resources make it unlikely that she will be re-housed until she becomes ill. She feels frustrated that their focus is purely on her alone rather than as someone with responsibility for children.

"The children's needs are not taken into account, as they are not council tenants until they are older or start paying council tax."

Her hope is to remain asymptomatic until her children become independent.

"... if they wait until I'm ill ... the children have got to start all over again with people that do not know me ..."

Jim and Rosie

After he developed symptoms of myotonic dystrophy, Jim and Rosie's council accommodation was altered to meet his needs. But, as Rosie said:

"In the event of anything happening to him, I'd have to move out into a normal three-bedroom house. I wouldn't be entitled to live here, as this was an adapted house for a disabled person, which I can appreciate that someone might need, but at the end of the day, this has been my home, the children's home, this isn't just a house, it's our home."

She resumed full-time work in order to buy the house and provide security for their children but is penalised for working.

"If you're a disabled partner working, or if you've got a disabled child, you get a high rate family credit. But if you've got a disabled partner you don't get it. … I'm worse off by working … I'm paying full poll tax, I'm paying my mortgage on this house and we're struggling."

Louise and Jim

Adapting housing may not be the only matter to consider. Housing can involve emotional issues too. Louise's parents live in a bungalow adapted to accommodate her affected mother's needs. After learning that she too would develop Huntington's disease, Louise and her husband had planned to take over this house when Louise becomes symptomatic. By this time her mother, if still alive, would probably be in full-time care. However, she now feels that it would be depressing to stay in the same house as it reinforces the sense that she is following in her mother's footsteps.

" ... even those who are relatively well off can face other constraints, such as variations in service provision."

Leila and Frank

The last example shows that even those who are relatively well off can face other constraints, such as variations in service provision. Leila and Frank were upset that they had had to wait a long time for an appointment with their regional genetic counselling centre.

"We were told that if only you lived in Y you'd actually get an appointment sooner, and we were on the point of moving. … It placed HUGE stress on us … to be told that because you lived in the wrong place you couldn't get treatment immediately."

Having counselling is important, as it is often only then that parents learn that they need to sort out mortgages before having predictive testing.

"They said this would be a good time for you to get your house in order, if you've got mortgages and life insurances that you need to sort out, right now you haven't had a test and you don't know the answer … go and sort your lives out."

Their wait delayed plans to adapt their house should she test positive. To end on a positive note, after learning that she would definitely develop Huntington's disease in the future they were able to plan and implement adaptations to meet their envisaged housing needs.

Identifying barriers

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