Housing

Home of their own

Where will our children live when we are too frail to
support them? And how can we offer them security
after we are gone? Such questions haunt the parents
of every learning-disabled child. Here, Darren Devine
discovers how one family turned to part ownership of a
home as a solution; then, on page 24, an autism mum
explains how she set up her own supported living home

Jacky Martel thought that she

and her husband could not
continue caring for autistic son
Tomas beyond his 18th birthday.
Tomas, who also has a profound
learning disability, can shout at
over 100 decibels for hours on end
and bang on windows.
The couple also have two other
sons of 21 and 19 and Tomas’s
challenging behaviour took its toll
on family life. Despite the
pressures, Martel was determined
to find the right home for her son.

He loves being
outside and
Legal advice: Jayne Knight says if
he needs to go in and your loved one lives in an annexe on
out and in and out your property you have to show the
tenancy has not been contrived in
of the garden” order to gain housing benefit

She wanted a property that was through shared ownership. The

secure, suitable and near the family
home in Stroud, Gloucestershire.
Her unwillingness to compromise
on Tomas’s future meant he ended
up staying with his parents until he
was 23 before the family found
what they were looking for.
Martel pursued home ownership
for Tomas, 24, after setting up a
£100,000 mortgage on her son’s
bungalow through housing
association Advance. The
Oxfordshire-based social landlord
uses the government-run home
ownership for people with long-
term disabilities (HOLD) scheme.
The scheme offers the chance
to buy a home on the open market
disabled person buys an initial
share worth between 10 per cent
and 75 per cent, with a housing
association buying the remainder.
Tomas owns 60 per cent and pays
rent in the form of housing benefit on
the 40 per cent owned by Advance.
Detached bungalow
Martel does not want her son to own
the property outright because the
housing benefit includes a service
charge covering property
maintenance. She says: “He
(Tomas) doesn’t cope with change
easily. He needs quite a certain set
of things for a house to himself, so
it’s a detached bungalow with a

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 Housing

Introduction & Application

to the SCERTS Model
2 DAY
TRAINING COURSE
June 2 Day 29-30. 2023 £293**
January 2 Day TBA. 2024 £TBA**
Venue: Kettering Conference Centre
Using the SCERTS curriculum Home sweet garden. He can’t perceive down In a report in 2020 by charity
& practice principles to design home: the and up very well, so it needs to be Families cannot Learning Disability England and
bungalow that on one level, or pretty much on one the Housing Learning and
programming for children with Autism Tomas moved level, and he loves being outside say a loved one Improvement Network, the HOLD
Spectrum Disorder into last year. and he needs to go in and out and has a tenancy because scheme was described as “very
Inset: Jacky in and out of the garden.” positive” and “life changing for
Course Led by Martel, who they have a room in some people”. The Finding Our
helped her Protected from eviction the family house” Own Way Home report said the
Emily Rubin, MS, CCC-SLP Director. son Tomas The bungalow, where Tomas has “HOLD programme should be
buy a stake in round-the-clock care, offers more made available to a larger number
This training is appropriate for: the property security than standard supported designed to give people the power of people”.
educators, therapists, administrators, through living arrangements because to decide where they live, the type
housing Martel says he is protected from of home they live in and whether Separate annexe
professionals and families association the threat of eviction by his 60 per they live alone or with others. Building a separate annexe within
Advance cent stake. Tomas’s bungalow is near his the family home is another option
AM/PM refreshments, light lunch. In many supported living set- parents’ home, so the family can for those unconvinced by
ups, the company providing the easily maintain close contact. residential care or the standard
Office: 199-203 Blandford Ave, Kettering, care also owns the property and if Advance contributes its own type of supported living where the
Northants NN16 9AT. Tel./Fax: 01536 523274 they decide they cannot support funding to the HOLD scheme, person is a tenant without a stake
autism@autismuk.com the person then they can be left along with a grant from Homes in the property. Martel says families
Book online: www.autismuk.com homeless, she says. England, which pays for new considering trying to claim housing
**(Covid-19): The training courses above will take place subject Under the HOLD scheme, affordable housing in England. If a benefit on a separate annexe
to the safety concerns of delegates, ours & venue staff, including homeowners can buy more shares grant from Homes England is not within their own property will find it
restrictions that may be imposed by the UK or US governments.** in the future and so reduce the available, then it can be replaced much easier if they can show it has
amount of rent owed. Advance by funding from family or friends or already been rented out on a
says the HOLD scheme is a Trust (in the form of a loan). commercial basis.

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 Housing

The mother-of-three, who is an
advice co-ordinator for a charity,
has a separate flat on the top floor
of her home that she has rented
out to lodgers. She says: “If my son
was able to live on the top floor I
believe I could get housing benefit
for him to live there.”
Housing benefit
Jayne Knight, a specialist housing
adviser for people with disabilities
and autism, says people cannot
claim housing benefit for living in
the same property as a close
relative. And neither is it possible
to claim the rent element of
universal credit, she says.
To claim housing benefit, the
accommodation has to be separate
and exclusive, with a legally
binding tenancy agreement.
Housing benefit officials see this as Knight says: “Families cannot
the person having their own front say a loved one has a tenancy
door, kitchen, bathroom, living area because they have a room in the
and bedroom. There may also be a family house. The person would
carer’s bedroom. have to have exclusivity and live in
Usually, the disabled son or and have entry to their own
daughter’s accommodation is property.” She advises there should
within a separate annexe, such as be a “visitors’ policy” in place that
a purpose-built garden property or would lay out how family members,
a converted garage. Officials will such as parents, go in the person’s
be keen to check that any home. But a best interest meeting
arrangement is genuine and that may decide family members
nothing is “invented” or “contrived” should be able to go in with the
simply to get housing benefit. usual courtesy of knocking first.
LINKS
Advance: www.advanceuk.org
Finding Our Own Way Home report: www.learningdisabilityengland.org.uk/
wp-content/uploads/2020/11/Finding-our-own-way-home-report-Final-1.pdf
HOLD scheme: www.ownyourhome.gov.uk/scheme/hold
Housing Learning and Improvement Network: www.housinglin.org.uk
Learning Disability England: www.learningdisabilityengland.org.uk

Team builders
Designing the perfect long-term home for your adult
autistic child and a few of their friends doesn’t have
to be a dream, says Sally Lawrence of The Simon
Trust. She explains how she helped to make it a
reality for her son Simon and how the Trust would
like to help other families wishing to do the same
Our charity, The Simon Trust, is essential for the family to keep hopefully ‘for life’ for nine severely
gets a lot of emails from desperate an eye on what is happening. autistic young adults. They are all
parents wanting to find somewhere from Surrey, but six of them had
for their child to live when Home for life previously been living at Priors’
schooling comes to an end. Social As a charity, we helped Surrey Court in Berkshire until they had to
services are under enormous County Council set up a unique leave at the age of 25.
strain at the moment and finding supported living home called Space was our key factor.
suitable accommodation for Linden Farm in Alfold, near Space to get rid of excessive
severely autistic young people can Cranleigh in Surrey. It’s a home energy and frustrations. Linden
be really difficult. Farm has six acres, which provides
Often, social services will offer that space. The Simon Trust has
placements in a different county to We helped now financed a 400-metre cycle
where the parents live, but then the Surrey County track to let off that excessive steam.
phrase ‘out of sight, out of mind’ Having a good balance of
comes into play, along with fears of Council set up a on-site and off-site activities is so
abuse such as that suffered by unique supported important for these young people,
residents at Winterbourne View currently aged between 20 and 30 Nurturing: Sally Lawrence’s
private hospital and Doncaster living home called and all with very different son, Simon, who now lives
care homes. Having your disabled Linden Farm” characteristics and needs. As in a shared home with
son or daughter in the same county parents, we provide and try to other autistic young people

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 Housing

Linden Farm: this home for nine

young people is set in six acres

Checklist for setting up your own parent-led facility

Dr Christina Corsello Orahovats
TEACCH® Autism programme
How do you go about setting up a ‘parent led’ new facility in
Glenna Osborne your county? This can be a long and fraught journey, but one
worth taking. Here’s a checklist:
Find other families with autistic sons and daughters of similar
age and ability in your county. There’s safety in numbers. It is
a daunting project to set something up, so it’s good to have
plenty of allies.
three accommodation houses and an activity centre. Parents
can alleviate the total costs by raising money for the on-site
activities – the ‘nice to haves’ rather than the necessities.
A Stakeholder Board would be helpful. Working with your
council, invite several independent autism experts, parents
and several people from your council to advise the architect
on what to build. Regular meetings to discuss even minor

3 DAY TRAINING COURSE Create media awareness – local TV, radio, social media and
local newspapers. Tell the story of your children, point out
that they deserve better and that there is nothing suitable
available in your county. Social services need to be reminded
issues such as light switches and paint colour are important.
A development for between eight and 10 young adults brings
economies of scale and practicality – especially in finding a
suitable care provider. Larger properties tend to be frowned
June 3 DAY 26-28. 2023 £435.00** of this, although they will already be aware. on by social services as being too institutional.
Approach your director of Adult Social Care and ask if they Housing associations provide another resource. You could
January 3 DAY TBA. 2024 £TBA** have any council-owned plots of land available. They often
do. Contact local land agents as a second port of call.
work alongside one of them and, in fact, your council may
prefer this route. The housing association can then take over
Venue: Kettering Conference Centre Put together a business plan, working alongside your council,
that shows there can be savings by having these very
the management of the property and necessary repairs.
The blueprint, layout and structure is there for all to see at
vulnerable and expensive young people in the county with Linden Farm and may give you some ideas.
Course Led by Dr Christina Corsello supported living. The Government then pays the housing Parental involvement is essential. Linden Farm opened in
benefit. The Simon Trust can help with a fledgling plan, but 2019 and all the parents are still heavily involved. We have a
Orahovats, Clinical Professor, Department you need to work closely as a team with your social services. Residents’ Association that the young people pay into, which
Together, you are both solving a real problem. then pays for insurance on anything that the Association
of Psychiatry, Director of Clinical Services Your council has a duty of care to look after these young buys, such as gardening equipment, and any group activities,
people. They will baulk at the cost of building a new home such pizza evenings. We all visit at least once a week to take
UNC TEACCH Program from scratch, but in the end they should be able to see our young people out and to see what is happening. These
savings in comparison to an out-of-county placement. very vulnerable people need the involvement of their families,
Linden Farm has four separate buildings for nine people, with so it’s important that they live in their own county.
These trainings are most appropriate for: educators,
therapists, administrators, professionals, & families promote arts and crafts, music, not want to upset the neighbours.
cookery, cycling, swimming, Having a good Above is a checklist for setting
holidays, trips on a train and to the up a parent-led facility. If you’re an
seaside alongside the provision the balance of autism parent you have already
AM/PM refreshments & light lunch care company organises. on-site and off-site fought many battles to get to where
A house in a leafy street in a your child is now, but if you can
Office: 199-203 Blandford Ave, Kettering, Northants NN16 9AT. large town may be fine as a home activities is so manage this last hurdle you will
Tel./Fax: 01536 523274 autism@autismuk.com Sally Lawrence: for more able autistic people – important for these have hopefully provided them with
Book online: www.autismuk.com her charity, the those who can cope with traffic, a home for life – which is definitely
Simon Trust, is neighbours, noise and a bus ride. young people” worth the effort.
**(Covid-19): The training courses above will take place subject to ready to advise We, however, were looking for a The Simon Trust will help and
the safety concerns of delegates, ours & venue staff, including other parents site on the edge of a village or of busy roads, and to have two to advise where we can. We have
restrictions that may be imposed by the UK or US governments.** on creating a small town with a semi-rural setting. four acres for the buildings and already navigated this fraught
home for life We wanted it to be close to a on-site activities. These young journey. Please have a look at our
community, but far from the danger people can be noisy, so one does website: www.thesimontrust.org.

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