Learning disability and autism in West Sussex

CQC registers services by the groups they support, and “learning disabilities or autistic spectrum disorder” is one of them. It is one of the largest groups in the register, covering everything from a couple of hours of support a week to round-the-clock staffing in someone’s own home.

What support looks like

Supported living. You hold your own tenancy and a provider supports you in it. This is the mainstream model now, and it is what most people mean by independent living. See our supported living guide.

Care at home. Visiting support in a family home or your own home, for personal care, medication, cooking, or getting out.

Shared Lives. An approved carer supports someone in the carer’s own family home, either long term or as day support. Small, and often overlooked.

Residential care. A care home registered for adults with a learning disability. Less common than it was, following the policy shift towards community living.

Community services. Day support, employment support, and outreach that is not tied to where you live.

Who pays

Almost always the council, through a Care Act needs assessment. The means test works the same way as it does for older people, but the outcome is usually different: most working-age adults have capital below the £14,250 lower limit, so capital is ignored entirely and they contribute only from income, keeping at least the minimum income guarantee.

Three other routes matter here:

• Direct payments let you take the budget as cash and employ your own staff. Widely used, and worth asking about.
• NHS Continuing Healthcare pays for everything with no means test where needs are primarily health needs.
• Access to Work funds a job coach, equipment or travel if you are working or about to start. Not means tested, and never repaid.

Transition from children’s services

The handover from children’s to adult services at 18 is where support most often falls over. It should begin at the year 9 EHC plan review, around age 14.

Ask for a transition assessment in writing, early. If there is an EHC plan, it can run to 25, and it does not automatically end at 18.

Choosing a provider

Read the full CQC report rather than the headline rating, and pay attention to the well-led section. For services supporting autistic people and people with a learning disability, CQC assesses against Right support, right care, right culture, and the report will say how the service measures up.

Then ask:

• How many staff will support this person, and how is consistency managed?
• What is your staff turnover?
• How do you support communication, and do staff know this person’s way of communicating?
• What happens when someone is distressed? Ask them to describe a real example.
• How do you support choice, work, relationships and getting out?