Cutting day services for adults with learning disabilities would be ‘heartbreaking’

Cutting funding to day services for West Sussex adults with learning disabilities and autism would be ‘heartbreaking’ in the words of one parent.

Thursday, 1st April 2021, 9:33 am
Amanda Bairstow and her daughter Florence
Amanda Bairstow and her daughter Florence

West Sussex County Council’s latest budget announced the intention to ‘significantly reduce the spending on building-based services to create savings’.

Although no cuts are slated until the financial year 2022/23, parents of day service users have expressed alarm at what proposals could be in the pipeline.

Amanda Bairstow’s 31-year-old daughter Florence, who has a severe learning disability, attended the country centres at Aldingbourne and Ferring before the pandemic hit.

Sue Livett, Aldingbourne Trust's MD

She describes how for Florence attending a day centre is ‘everything’ as she calls it her work and wakes up every day with a sense of purpose because she has meaningful and enjoyable day-time activities.

Amanda, who lives in Ashington, said: “It gives her something fulfilling to do physically and mentally. She is stimulated and she needs everything facilitated for her.”

She described the Aldingbourne staff as ‘amazing with her, she has been so happy there and really devastated when she could not go’ during lockdown.

She has challenged the county council on the idea that accessing community-based opportunities instead of specialist day services will allow adults with learning disabilities to become more independent.

Sophie Mayes, Aldingbourne Trust representative of their access all areas co-production committee, has written a poem entitled ‘save our day services’:

Florence’s biggest challenge is verbal communication and her mother believes its ‘absolutely ludicrous to think she could access community services’, instead of the specialised support offered at places such as Aldingbourne.

She added: “It’s unrealistic to expect people with the level of disability Florence has got to access community activities.”

Amanda fears that ‘heartbreaking’ cuts would lead to reductions or even losses of placements for some users with potentially less funding going into the centre also having an impact on the services and support they are able to provide.

Charities such as the Aldingbourne Trust constantly fundraise, while users also have to contribute financially towards their day services.

In Florence’s case a large part of her benefits already go towards her shared lives placement in the Barnham area.

In a letter to the learning disability partnership board, Amanda detailed the effect not being to access physical services has had on her daughter during lockdown.

She wrote: “The pandemic has shown us exactly what happens to Florence when her ‘work’ is taken away from her and it has been extremely distressing for us all to observe. Florence has literally mourned the loss of her day service and despite the amazing efforts of her shared lives carer Alison and family, nothing has been able to replace what Florence has lost.

“Her mental health has deteriorated and obsessive behaviours, challenging outbursts and low mood which had previously been well managed have returned.

“Florence is a very special person, with very special needs. She needs specialist care in all environments and enjoys spending time with people like her. “There is no other environment where Florence can receive the specialist support and activities on offer at a day centre like Aldingbourne and it is therefore an essential service.”

She accused the county council of ‘attempting to dress up proposed funding cuts as opportunities to improve day services’ and felt it was clear changes ‘are purely finance led’ and warned that reduced funding to day services ‘will have a devastating, wide ranging and long lasting impact on people with learning disabilities’.

‘No final decision made’

A spokesperson for West Sussex County Council said: “The county council is not making cuts to learning disability day services in 2021/22. This was initially proposed but consideration of potential savings have been deferred until next year. It is important to stress no final decision has yet been made.

“We will, over the next year, work with people who currently use services, their families and friends, and other key organisations to learn from people’s experience and explore their ideas about what support they and their families want in the future.

“This feedback will be taken fully into account when we consider proposals for the future of learning disability day services, so that we can deliver the best possible support within available resources. Any potential changes to services will then be subject to a full public consultation.”

“The county council will continue to support people who are assessed as needing care and support.”

Cuts ‘restricting choice’

Sue Livett, who is the managing director at the Aldingbourne Trust, described how they are facing a ‘perfect storm’.

The trust supports people with learning disabilities and autism with housing, jobs, being part of their community, friendships, relationships, their finances health and interest and is part of the social care system.

Over several ‘tough years’ central government has reduced funding to councils and these cutbacks ‘are being felt by people in need of support’.

While demand for social care is increasing funding ‘has been cut again and again’, with the county council planning to make cuts again in the coming years.

She outlined how the last year has been tough for people with learning disabilities and autism as well as on their carers and families.

People who would normally be supported at the Aldingbourne County Centre and its creative arts studios have missed their pre-Covid lives, helping to run the cafes, shops, work on the farm, sell plants/maintain floral displays across the rail network in West Sussex, collect timber, develop their art and craft skills, restore furniture and run events.

Some face to face support has continued, but most of it has gone online, with people keen to return to see their friends and have meaningful and active lives.

People with learning disabilities start from a baseline of multiple disadvantage as they are less likely to work, have poorer health than the general population, are more isolated and during the pandemic have a mortality rate six time higher than the general population.

Sue said: “It appears people with learning disabilities and their families have been excluded and forgotten in debates, planning and policy. Despite their mortality rate in the pandemic they were not prioritised for vaccines. They must not be collateral damage or the first in line for more cuts to services.”

She highlighted a recent report from the learning disability and autism advisory group for the government’s social care taskforce on what more needs to be done to support people through the pandemic.

Their recommendations include the need to restore, maintain, and adapt the support for individuals and families already assessed as having eligible needs. This means ensuring councils and clinical commissioning groups (CCGs) pause care, health, or personal budget reviews during the period of service disruption, unless requested by the individual, urgently identify and provide the level of resources needed for councils/CCGs to financially stabilise provider organisations at risk of collapse.

She added: “However, some of the WSCC proposals suggest stopping and reducing support at day services and restricting choice.”

In addition the trust is getting a flood of enquiries from families regarding West Sussex County Council increasing their charges for social care.

Social care is not free to people who receive it – people are means tested and expected to pay from their benefits.

A ‘very distressed parent’ had contacted her after her son’s contributions went up from £3.90 to over £83.00 a week.

She felt this ‘will strip household incomes down to the bone’ and also raised the extremely low-level of carers allowance.

Sue concluded: “The support which is provided by day services helps to keep people with disabilities engaged, valued and able to develop. If these precious services are removed there will be more people with poorer health, less opportunities to maintain and develop new skills and locked out of ordinary lives.”

‘Tax on disability’

Sarah Welch’s 22-year-old son Matthew normally spends two days a week at Aldingbourne alongside a day at both The Point in Chichester and Chestnuts in Bognor Regis.

She is also concerned about the impact cuts will have on the availability of day services.

After a recent reassessment, the amount they contribute to day services a week has increased from £37.70 to £72.35, which takes up almost all of Matthew’s employment and support allowance.

Sarah, who lives in Barnham, labelled it a ‘tax on disability’ and asked why they were paying more when the county council was potentially reducing services.

A West Sussex County Council spokesman said: “The Minimum Income Guarantee (MIG) is the amount used within a social care financial assessment to ensure that people have sufficient amount of money to cover their day to day living costs, once their social care contributions have been taken into account.

“The decision to change the MIG to the statutory minimum for adults of working age was taken following a public consultation. Customers who made their first contributions after 8 April 2019 have been assessed under the statutory MIG rate. Existing customers who had a financial reassessment after the MIG change had a temporary cap or limit on any potential increase to their contribution for 2019/2020 and were informed of the total amount that would be payable in future.

“The annual financial reassessment process for 2020/21 for all customers occurred much later than normal due to the pandemic so the change to the weekly charge, either as a result of the MIG and/or any increase or decrease of income, has only been applied from January 2021 rather than April 2020.

“Also, any cap or limit that was previously part of any assessments was only removed from January 2021, rather than April 2020, then the full notified charge applied.

“In our letters to customers we have asked people to contact us if they will find it difficult to pay so we can work with them on an individual basis.”

Don’t Cut us Out has started an online petition opposing cuts to social care services. It has been signed by almost 1.500 people.

It says: “These cruel cuts will be a hammer blow to our most vulnerable adults (including physically- and learning-disabled adults and to older people).”

Visit www.change.org/p/west-sussex-county-council-west-sussex-county-council-stop-the-cuts

Sophie Mayes, Aldingbourne Trust representative of their access all areas co-production committee, has written a poem entitled ‘save our day services’:

Please don’t cut our day services,

at Aldingbourne Trust,

there a lifeline to people like Us,

with learning disabilities and autism,

we rely on them,

Aldingbourne Trust is like one big family to us,

and helps us to live our lives to the full,

be part of the community,

have some independence,

live a healthy life,

which helps our mental well-being,

also have a social life,

be treated the same as everyone else,

as we are equal in this world.

Just because we have disabilities,

it doesn’t mean our rights are less important,

we just need some support,

from the day services,

to help us have the life we deserve,

and it be wonderful to live.

As life would be awful,

without the amazing day services,

and the wonderful staff at Aldingbourne Trust,

we would feel very sad and unhappy,

if we could not go to day services,

and could well develop mental health problems,

because we are not getting out of our homes,

and having things to look forward to in life,

we don’t want to get ill,

by not having our day services at Aldingbourne Trust,

and the wonderful support from the amazing Staff.

So please listen to us,

and think about the impact your decisions,

will have on us,

as you don’t want to be accountable,

for a number of problems,

that will happen if you cut the day services,

here at Aldingbourne Trust,

so please please think about us,

people with learning disabilities and autism,

when you make your decision,

West Sussex County Council.