Written evidence submitted by National Network of Parent Carer Forums [DPH 016]

The National Network of Parent Carer Forums (NNPCF) is the independent, national voice of parent carer forums. We are run by parent carers with lived experience.  The NNPCF is a representative organisation, consisting of up to 152 local parent carer forums at any time across England.  Parent Carer Forums are pan disability. This means each parent carer forum includes parent carers from a range of backgrounds with a wide range of experiences in Health, Education and Social Care as their children have a wide range of conditions. We currently have approaching 118,000 members.   

Our vision is for the best possible opportunities and futures for all children and young people with SEND and their families.

Our mission is to deliver better outcomes for families living with special educational needs and disabilities (SEND). We aim to create a culture of participation and co-production across the education, health, social care, and the voluntary sectors. This means that we are involved in all aspects of designing, commissioning, delivering, and reviewing services as an equal partner.  We empower our members to ensure that their voices are heard at a local, regional, and national level inspire our partners by sharing good practice and knowledge. 

This submission focuses mainly on the lived experiences of parents of children and young people with SEND and their experiences in the housing sector.

As a membership organisation, the NNPCF has based this evidence on reaching out to our networks of Parent Carer Forums.  We received 21 responses to our call for evidence which are summarised below.

What can the government do to ensure disabled residents across England have access to accessible and adaptable housing?

Responses to this question were varied, but there was a common theme that neither central government nor local authorities understand the needs of disabled people enough to be able provide the right housing for disabled people. 

“The government should listen to the disabled people and respond accordingly to their housing needs”

“Train housing officers, surveyors and other housing employees on how to understand challenges met by disabled people and their families”

Other responses included increasing the level of priority disabled people get when applying for social housing, as well as doing more to support landlords providing accessible housing.

“Support the development of supported housing schemes.  Increase housing benefit for landlords who provide accessible housing (ground floor facilities, ceiling track hoist, ramps, wide doors etc.)

Other ideas suggested to improve access to accessible and adaptable housing include:

Training

• Better training for those working in housing to understand the challenges met by disabled people and their families
• Educate housing staff in anti-discrimination and legal obligations
• Better understanding of the impacts of living in cramped living spaces on the whole family as well as those with needs
• Ensure Local Authority representatives understand how the layout of a property affects those with disabilities (including those without physical difficulties e.g. autism)

Access

• Ensuring disabled people have access to the correct amount of bedrooms that they are entitled to
• Increasing the priority grouping for disabled people (including those with autism)
• Building more accessible housing – one suggestion was to put covenants on them so they are only sold to people who need them
• Helping private landlords with installing adaptions – one additional suggestion was to increase housing benefits to landlords who provide accessible housing
• Building more accessible social housing
• Ensuring housing is in a community, near amenities particular transport and health centres

Planning

• Local authorities knowing who their disabled adults are, so that regular assessments of the suitability of housing can be carried out
• Ensuring planning takes into account the needs of disabled young people so that they can access the same opportunities as peers
• Ensuring local authorities actively plan for their upcoming needs and demands in their area (including for specialist supported housing and residential care)
• Plan for placements to meet current and foreseeable needs
• Ensuring disabled people in the private sector can afford suitable housing (including looking at how housing benefit/universal credit can help with this)
• Plan for the needs of those who need supported living – including those who might fall between needing full time support and no support.

What should the role of the Government, Local Authorities and developers have for ensuring the delivery of suitable housing for disabled people?

Respondents very much felt that the Government, and Local Authorities should be doing more to ensure the delivery of suitable housing. 

“The Government needs to establish what the requirements should be for local authorities and developers to follow.  Good behaviour should be rewarded and bad behaviour punished”.

There was very much a feeling that there should be much more active planning to ensure Government and Local Authorities are aware of upcoming housing needs and can plan accordingly.  Many of these ideas were listed in the above question.

“Undertake research into the current and impending needs and demands for a specialist supported housing and rest care. Plan for it and ensure a timely delivery of a good range of placements in sufficient numbers to easily meet the current and foreseeable needs”

“Government should identify all groups who need adapted and support to live independently.  Ensure that guidance for social care and adaptions meets the needs of young people entering adulthood and covers all sorts of need. 

Respondents also felt that young adults with SEND have different needs to other disabled people or the elderly and that this should be planned for:

Ensure a different framework around supported living and social care for young people entering adulthood compared with elderly people.”

“Local authorities need to make sure there is appropriate housing for all cohorts of disabled young people.  These should be designed to support social life and building communities, and should cater for similar aged young people”.

When planning for the delivery of suitable housing Government and Local Authorities should also plan for the location of the housing as well as the design:

“Build accessible homes near special needs schools and mainstream schools so that many who receive home to school transport can cut transport budgets for authorities”

“The housing needs to be in a community, near amenities particularly transport and health centres”

Respondents also felt Local Authorities could do more to work with other partners to ensure effective planning and delivery of accessible housing:

“The authorities must consult and work with disabled organisations and OT.  They should require the adaptions are done correctly on empty homes and then deliver those homes to disabled people.  Most disabled homes are needed for families.  Such as ground homes with some outdoor private area for kids with autism to enjoy safely”

Many respondents felt there should be more choice over properties.  Very few mentioned developers, perhaps suggesting the direction on this needs to come from central Government.

Does the disabled Facilities Grant fully support housing adaptions?

There were 16 responses to this question (a drop out of 5 from the previous question). 

1 respondent replied yes; 11 respondents indicated no; 4 had no knowledge of the grant.

The only positive respondent was additionally very negative:

“Yes but it needs to be at a higher rate and the process significantly speeded up”.

This suggests the Disabled Facilities Grant is not working for children and young people with SEND and their families.

Reasons for the DFG not working include:

Social housing

• “The contractors who take the job for the local authority are not always adequate and sometimes the wait could be for up to years despite the availability of funding”

Private sector

• “The adaptions were too much and so the rent the landlords were asking were too much”
• “Is of no use in private sector if landlord does not want adaptions made.  It does not cover all costs in all cases”

Generic

• “I was told if I was to get housing adaptions from the OT I would need to stay in the property for 5 years…so I have worked on things myself”
• “No.  The amount is often insufficient.  The process is lengthy and not always supportive.  Assessments need to take account of longer term needs…. We had to practically beg for a bath not a shower for son with profound needs who was frightened of showers (he’s also visually impaired”

Additionally, respondents raised the impact of the works on the wider family as well as the impact on housing on carers:

“We have been rejected twice due to intellectual difficulties and the impacts on carers and family not considered.  Not even meeting the person to see how the environment affects his life”

How can the Government ensure it provides sufficient provisions to support disabled residents who do not live in new build homes?

Respondents here felt that the Government could do more to research into the issue and come up with other solutions.

“The Government should do more work and researching on how to support such vulnerable people.  I guess the Government could at least do repairs to those homes after consulting the disabled people.”

There was also a feeling that the Government could do more to maintain listed and old buildings in a way that would make them suitable for disabled people. 

“At the moment people with disabilities living in Central London feel they live in a prison because of the rejection to many OT adaptions if the building is listed.  People are left in unsafe and unsuitable conditions with no alternatives”

Another suggestion was to:

“Identify all homes that are suitable for people with disabilities and incentivise their purchase – by disabled people, local authorities and housing associations”

Other considerations included the outdoor space: ensuring there is sufficient parking, and safe outdoor areas for families with children.  Additionally, looking at freeing up ground floor stock for those who can’t access stairs, or those who might be a safety risk near windows in an upstairs flat.

A practical suggestion was to include partners other than OT at the beginning of the DFG process:

“An architect or builder to advise at the beginning of the DFG process alongside the OT would help.  Our builder made a lot of good suggestions once building started that the OT didn’t consider and which made the adaptions much better for us a family without adding to the cost”

What can the Government do to support disabled tenants in the private rented sector?

Respondents felt it was very difficult for disabled people to enter the private rental sector.  This is partly because they need stability and long term contracts, and also because of the cost of adaptions.

“Private renters (like myself) live in fear of becoming homeless all the time….People need to have stability like social housing or long-term contracts”

Some suggested that disabled people should have extra rights, and private renting for disabled people should be made more attractive to landlords by the Government.  Many felt that legislation and grants to protect vulnerable tenants would be of benefit.

Other comments

The NNPCF is concerned to hear from its membership around the challenges of finding suitable housing for disabled people, and how many of these challenges are caused by policy:

“Current policy isn’t helpful for disabled people.  Disabled people need a suitable place to live and that isn’t available.”

“There is a big gap between housing authorities and the disabled people as local authorities tend to ignore the housing needs for such people”

The NNPCF also wishes to highlight the importance of ensuring accessible housing in both its availability, accessibility and location enables integration into the community:

“We can’t visit others, they must come to us.  So the more wheelchair accessible homes, the less isolation”

“They [accessible housing] should be situated in areas where young people can travel independently to enable them to be as independent as possible.”

The NNPCF would like to see more integrated and wide ranging thinking and planning into the accessibility and availability of accessible housing, both by increased research into the issue, better forward planning, and working together of partnerships between disabled people, their carers, health professionals, and the housing sector, both for adaptions and for building new homes. 

September 2023