Living the Life Supported Living Parent Notes

Why might it be of interest?

You may hear the terms supported living and independent living (in the community) bandied about and wonder what they actually mean and how they may come about.

Both refer to living arrangements where the person involved needs support to live in their own home and away from family.  In this document supported living means a living arrangement where the young person needs quite a high level of support – there’s a fuller definition in the document as this is a specific term.

Independent Living (in the community) refers to living arrangements where a young person needs some degree of support but less hours of support and probably less intense support than a young person in supported living.  This is my term really but I want to be able to differentiate between the 2 living arrangements.  Again, further information in the following document.

This is what we’ll talk about today:

• Eligibility and social care assessment
• Supported Living
• Independent Living in the Community
• Residential Care
• What do SL / IL homes look like
• Where are they sourced
• Who pays
• Thresholds for social care and benefits
• Shall I stay or shall I go?
• Preparation or how to convince a reluctant young person

Eligibility:

To be eligible for any of the above a young person must be eligible for a care package from adult social care or continuing health care from the NHS.

This is the route into any kind of living arrangement that requires some support for the young person.

Social care assessment:

When a young person turns 18 they may be eligible for an adult social care assessment

• Regardless of whether they have had any support from children’s services – or an EHCP
  • Most young people with an EHCP have them purely for educational support and will not need social care support
  • The bar is lower and the assessment is very different for adult services

The first condition to meet is that a young person has a disability or brain condition – ASD is a brain condition, ADHD is not.

In general young people with a specific learning disability will not meet the first condition unless they have further disabilities or health needs.

The assessment assesses a young person’s need across a range of daily living activities:

• Personal care – washing, dressing, toileting, being appropriately clothed
• Eating and drinking
• Using the home safely – keeping it clean, being safe in the home
• Relationships and accessing the community – including education and work

A young person’s needs should be assessed on what they can do for themselves without support

This can be difficult to work out when they live at home and you do a lot for them

Support can mean prompting, supervision, actual care

• If the young person can’t achieve 2 or more of the outcomes
• And their wellbeing will be detrimentally affected
• Then they are eligible for a social care package

For example, your young person may be able to take a shower and wash their hair – but would they do this if you didn’t prompt them?

Your young person may be able to dress themselves – but if you didn’t wash the clothes and lay them out for them would they be able to achieve this?

Your young person may be able to use a card or phone app to pay for their shopping, but can they manage their bank account to ensure they have enough money to pay their bills?

At the social care assessment if their needs look like they might meet the criteria for continuing healthcare then they might be moved to CHC – if a young person is assessed and meets the criteria you won’t have a choice .

Their health needs may be been identified well before they turn 18 and deemed likely to meet CHC criteria in which case they will be assessed by the NHS.

Supported living is still an option but the NHS is more geared up to looking at residential care.

Your NHS case worker will have their own lists of supported and residential living options – they’re not the same ones as adult social care have.

It is possible for young people funded differently (ie, one person by adult social care, another by the NHS) to live together in a supported living but there would be a bit of work to do to get the arrangement together.

Supported Living:

A model for independent living where housing is provided alongside support, supervision or care to help people live as independently as possible in their community.

Both elements – care and house – have to be provided together but the contracts for housing and care are separate.

The care is provided by the landlord or by a care provider on their behalf.  Care and housing are separate so a young person can move house and take their care package with them or change their carer and remain in their home.

In practice the providers will work closely together.

Care provided is more than minimal

This is not defined but it will be:

• more than a short visit once a week
• more than general advice and guidance
• the support provided as well as the time spent makes a difference
  • eg 121 support is more substantial than group sessions
  • support actually provided counts for more than support simply available
• The young person has a tenancy agreement

This means more security than a registered care home

Disability / health needs / complexity are not the determining factors in suitability for SL.  There’s no threshold that takes supported living off the table and you have to look at residential care.

The accommodation can be in:

• Shared houses
• Blocks of flats – all occupied by disabled people
• Community living – eg Camphill

Independent Living in the Community:

This isn’t an ‘official’ name but I wanted to be able to differentiate between Supported Living and living in the community with support.

There are no absolute needs that make supported living or independent living in the community more appropriate.

But in general, young people in Supported Living will have a learning disability and higher support needs – this is certainly the case locally.

This cohort may not be a natural match for a more able young person – perhaps with no cognitive impairment

So living in their own flat

• Or sharing
• With social care support provided flexibly as needed
• May be more appropriate for this group

A young person may have a house from a housing association or the council via the housing register

Or they may rent privately

The support provided may be called:

• Outreach
• Floating support

What support is provided will vary from person to person depending on their needs and provided more flexibly than a person with high support needs

They must be in need of support but the support is not in any way connected to their housing

• ie not arranged or provided by their landlord
• likely to be arranged by adult social care either directly or via a direct payment

For example:

A young person may need help to pay bills and monitor their bank account

And someone to make sure they get to the gym once a week

Another young person may need help on a daily basis to prepare a healthy meal but they can manage their money without help

It’s likely to be somewhere around 10-15 hours a week

Although this is flexible

Residential Care

A quick look at residential care

No right or wrong but residential care is often not the best setting for our young people

• Housing and care are wrapped up together so you can’t change one without the other
• Less security – you can be on a month’s notice to quit
• You may have limited choice about what you do during the day
• The care home timetable will be aimed at the majority
• Mixed ages at best – but this might not be a problem for your young person
• May not be particularly local
• No choice about who you live with
• Potentially less focus on promoting and supporting independent living skills
• Almost all your benefit money will be used as a contribution to your care
  • Left with about £30 a week
  • As one parent said – this doesn’t even put petrol in their mobility car
• This is the model for older people needing care
• But the same rules apply to everyone using residential care

Benefits

• No additional bills
• May be less intense – greater variety of people to mix with
• Probably less ‘organising’ as meals, activities all provided by the care home

However, when a young person opts for residential care through an adult social care package their particular needs will be taken into account to ensure the package provided caters to their needs.

Eg, if a young person needs to be active the support and activities should be included in the package – not just left to whatever the home provides as standard.

I would presume this is the same for NHS residential care but I don’t have any experience in this area.

What do Supported Living homes look like:

 There’s no one size fits all solution

 Shared house with other young people

• Own bedroom but sharing kitchen, dining room, lounge, bathrooms
• Young people sharing the space
• May share some activities or occasional meals – or more
  • May live more like a family or more separately
• Likely to be staff present most of the time
  • Not necessarily 24/7
• One care agency to support all the young people

 Flat (or flatlet) in a house

• Own bedroom, may have own bathroom but share kitchen
• May not be any other communal spaces
• Young people living pretty much separately from each other
• Likely to be staff present most of the time
  • Not necessarily 24/7
• Likely to be a care agency commissioned by the LA to support all the young people in the house

Flat with warden

• Own flat, ie own front door
• May not be any communal spaces
• A warden onsite daily or 24/7 but likely still receiving additional care package
• The warden won’t be providing much direct support

Community Living

Such as L’Arche or Camphill

• Different locations will have a different focus
• Would need to visit all potential locations
• Likely to be an expensive option for the LA so clear justification needed

Having their own flat in a house or a block could lead to isolation

Better for young people able to get out and about more independently

Independent living in the community

• Own flat
• In a block of other flats but not specifically for disabled people
• No on-site care staff
• Care provided on a ‘floating’ basis
• If renting privately could be sharing with other young people

Care Packages

• the care package can be a few hours a week right up to 24/7
• it can be shared care, ie where one carer supports more than one person in the home
• it can be 121 care
• 221 care where needed
• it can be a mix of 121 and shared care

Where do houses for Supported Living come from?

Houses could be rented from:

• A private landlord – rented by the tenant or the council
• A registered housing provider – a registered social housing landlord or housing association
• The council
• A provider like United Response might agree a lease with a private landlord with the agreement that they can sublet to tenants
• A housing provider might rent their houses, using specialist housing and support providers like United Response as their managing agents
  • Not all housing providers are disability specific and in these instances they might prefer to let the house to the tenant using a managing agent like UR

Independent Living

• Local housing register
  • People register as individuals
  • Not sure how you’d go about getting a flatshare
  • Certainly both/all yp hoping to flatshare would have to be registered
• Private renting
• Self referral to a housing association (only sometimes an option)

Family purchase

• A family or group of families may decide to purchase a house for their young people
• Quite a lot to consider
  • eg maximising rent to cover all costs
  • Agreeing to lease the house to a housing provider or setting up a not-for-profit organisation to manage the house
• If rented privately to people on benefits they can only get the Local Housing Allowance rate (LHA)
  • Unlikely to cover all the costs of the house
  • So these would have to be met by the owners
  • May only work for more able yp who have an income
  • All the associated costs would add up to more than a yp on benefits could pay
• What are these costs?
  • Maintenance
  • Insurance
  • Voids
  • Bills for communal heat and light
  • Council tax
• A young person receiving Housing Benefit (HB) would have all of these included in their HB

Who pays?

This depends on whether it’s Supported Living or Independent Living

• Unless the person’s assets or income are above certain thresholds:
  • The care package will be funded by the LA
  • Rent will be funded by Housing Benefit or Universal Credit Housing Element
    • Fully or in part
    • Depending on the young person’s income

Care Package:

• Funded by the LA – based on social care assessment
• Financial assessment likely to lead to a contribution from the person if on benefits
• Earned income is not taken into account
• The size of the care package will change when a young person moves from home to Supported Living or Independent Living
  • So you don’t need to worry about future support requirements while your young person is living at home

Rent:

Supported Living

Supported Living has a specific status

• People living in Supported Living claim their rent through Housing Benefit
  • This is claimed separately from Universal Credit
  • It is a benefit that is not generally available now except in specific circumstances – like supported living
• The Local Housing Allowance (LHA) cap doesn’t apply but rents will be based on the LHA
• Higher rents have to be justified
  • Eg a tenant needs more space than most people
  • If this is documented and evidenced then a higher rent can be justified
  • Wanting to live in a penthouse flat with an indoor swimming pool in the middle of Richmond cannot be justified!
  • But having a large, open plan living area with an adapted kitchen might be justifiable if the young person is a wheelchair user, for example
• Some service charges can be included
  • eg communal heating and light (relevant in a shared house)
  • council tax
  • insurance
  • maintenance
  • voids
• House size needs to be appropriate
• Housing Benefit is means tested so if the young person has an income their HB will be reduced

In practice, if a young person only has benefits, ie no earned income, their rent and most of their bills (gas, electric) will be covered by HB

There’s usually some charge for costs not covered by HB

• Eg wifi, tv licence, personal heat and light
• Which the young person has to pay to their landlord

However, this household contribution can be set against the contribution the young person makes towards their social care package

Council property

Housing association or council house (Richmond does not own any property)

• An ‘eligible’ rent will be set for each property
• The LHA does not apply
  • But councils use this to work out their eligible rents
• If a young person only has benefits it is likely that their whole rent will be paid by the housing element of UC
  • If they have an income this will be taken into account and they may have to make some contribution towards the rent
• They will have to pay for their bills, gas and electricity
• Eligible rent can include some service charges, eg lift maintenance
  • But not heating, water, etc
• Rents are generally lower than the private rental market

Private renting

• Your rent is paid by the housing element of UC
• Each area has a LHA for different size homes
• This is the maximum rent UC will pay, regardless of the actual rent
• A single person in receipt of a disability benefit, such as PIP, is entitled to the one bedroom rate
• If they need sleep in care they will be entitled to the 2 bedroom rate
• You will pay for your bills, gas and electricity

Benefits calculators on the government website can help you work out what help you will be entitled to with your income and rent:  https://www.gov.uk/benefits-calculators

Thresholds

Universal Credit

• Savings/assets above £16,000

No UC or rent support

•  Savings below £6,000

Ignored for calculation purposes

•  Savings between £6,000 and £16,000

Benefit taper

Assumption that for every £250 of savings – over £6,000 – you have an income of £4.35

Doesn’t matter if you actually receive the income or not

• PIP is not counted as income for UC purposes

Social Care

• Savings/assets above £23,250

You fully fund your care package

• Savings or assets below £14,250

Ignored

• Savings or assets between £14,250 and £23,250

Will incur a contribution towards your package

For every £250 it is assumed you have an income of £1

• Financial Assessment

Everyone receiving a social care package will have a financial assessment

If you don’t agree to the assessment you cannot have your package paid for

• Earned income is not taken into account
• Benefits, including care component of PIP, are taken into account
  • But not the mobility component
• Disability related expenses (DRE) to reduce social care contribution
• Based on a minimum income guarantee (MIG)
• Difference between your MIG plus any DRE and your benefits is what you will contribute

The thresholds for social care may change – you may have seen news articles about increasing thresholds significantly – however they have not yet happened so this is what we are working with.

MIG

• Based on standard amount depending on whether you are under or over 25
• Disability premiums
• Disability related expenses
• Contribution towards your household in supported living (ineligible charges)

Shall I stay or shall I go?

Supported living or independent living isn’t something you choose today and your young person is in a new home next week.

It’s something to think about and plan for and accept that there is no set timeline as to when it might happen even when you have decided to actively go for it.

• No right or wrong time
• No right or wrong placement
• Not better to parent commission* or go with LA offer

A few things to consider:

Supported living

• Young person is and feels more independent
• Likely to encourage independence and socialisation
• Protected from potential issues at parents’ home, eg parent falling ill
• You have your days and weeks back!
  • When at school you have a good part of each day
  • Maybe from 8am to 5pm
  • Once education is finished the young person’s day or week is likely to be more varied – maybe more time spent at home
• You have to be able to let go
  • Accept that you are not as involved or as in control as you are when your yp lives at home
  • The initial separation may be difficult
• Your young person may not live near you
• You can become a parent again rather than a parent AND a carer

Staying at home

• You may all be happy with the arrangement
• You have the same control and involvement that you have always had
• A young person may not like having carers in the home
  • It may make them feel babied
  • eg having a babysitter when you go out in the evening – may not be safe to leave your yp alone but they probably don’t see it that way
• You may find yourself in a caring role more than you were when they were at school if their activities outside of the home take up fewer hours or they don’t have something on every day
• It can feel intrusive to have a carer in your home

*Parent commissioned supported living:  this is where a group of parents have entered into the housing and care provider contracts directly with the providers.  The LA is involved in the process as social care will be agreeing the care package but the contracts are not commissioned by the LA.  This gives parents choice – but also the management of the home.  In practice, there’s pretty much no difference on a day to day basis between a parent commissioned setting and a LA setting

 Preparation or how do you convince a reluctant young person?

• Talk about the future
  • Small conversations, rather than one ‘big’ conversation
  • Make it everyday
  • Positive about what the future may look like
  • Start early
  • You want it to come across as a natural progression
• Stay involved
  • With your young person’s friends, college
  • Do they do any independent living skills in college?
    • Can you do those at home?
  • Know what they are up to and what their interests are
  • Can you link any of that to independent living?
• Keep your young person ‘on side’
  • This will be very much easier if your young person is on side
  • Easy to say but not so easy to achieve
  • Helps in all sorts of ways:
    • Letting you help them manage their money
    • Keeping you involved in their life – going to the doctor; choosing their next college; where they want to live
  • Start separating from your young person sooner rather than later
    • Have other people involved
      • Yes, you may be able to do everything with/for your young person but it’s better for all if other people become part of their life sooner rather than later
      • It normalises having other people involved in their care and support
    • This might be easier once your young person turns 18 and is more likely to have a social care support package – and therefore the money to pay a support worker
      • But in the meantime, can you use friends or family to step in for some of the things you do?
      • I know that DLA/PIP mostly goes into the family funds but could you earmark some of it for an activity or support worker?
    • Use any (positive) examples you have:
      • Siblings, cousins, friends
      • Can any of the above have your young person stay over to experience what it’s like to live away from parents?
    • Overnight respite
      • Get this into your package if at all possible
      • And then use it!
    • Let your young person go on school trips
      • There will be a lot of preparation and organising but it could lead to confidence about being away from you
    • Success build confidence – for you and your young person
      • Take it in small steps
      • which is why I say start early as this could be years in the planning