Episode #2 Zillah Rainback


Have you ever imagined your child owning their own home? Not such an unusual question for most people. But if your child has Rett Syndrome, this sort of every day dream is often out of reach. Or at least, it might feel that way.

My guest on the podcast today is Zillah Rainback who managed to achieve exactly that on behalf of her then 19 year old daughter Hannah, who has now lived independently with support for ten years, in her very own home.

Zillah explains that there are two prongs to making this sort of dream a reality; obtaining the house itself and arranging the care package funding to go with it.

Zillah highlights how important it is to understand how the social care system works and shares some of the insight she has gained over many years professional experience in Safeguarding.

We also talk about the emotional side of the situation for parents, as well as how Hannah enjoys living independently and what we both thought as parents to young people with Rett living away from home when Covid-19 hit the U.K.

Wherever you are in Rett or life, I hope you get something out of this conversation!

We welcome your feedback. Let us know what you think of the podcast through social media, @reverserett on facebook, twitter and instagram or email me, [email protected]

Thanks for listening. Rachael Stevenson

Please note, this conversation was recorded in October so the information shared about Covid status is not up to date.

Show notes

Advance Housing provides housing and support for people with disabilities, learning disabilities, and mental health conditions. https://www.advanceuk.org/

Current government affordable home ownership/shared ownership schemes https://www.gov.uk/affordable-home-ownership-schemes

Zillah is a volunteer for Rett UK’s ‘Listening Ear’ service. If you’d like to connect with Zillah, please email [email protected] in the first instance.

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