Supporting Carers and Families - Lig Workshop

SUPPORTING CARERS AND FAMILIES - LIG WORKSHOP

FOR HAMPSHIRE LD PARTNERSHIP BOARD 6.7.2016

You will find here:

notes from the LIG workshops (colour coded)
the report from Judith Lesley-Smith - green LIG
the report from Carers Together
and responses to promises made by the Police, Passenger Transport and Advocacy

Main issues are (raised at the Partnership Board on the 6th July 2016)

Carers are still not valued
Heath checks for parents/carers are not happening
Carers assessment: no service after the assessment
Older carers are warn out. Crisis
Respite will be coming at last via Shared Lives. There is currently no choice and no flexibility
Isolation (no named person social worker)
Communication is bad. No database, no mailing to carers who want to be involved in their children’s lives.
General concern about carers looking after the young ones at one
Worried about the concept of doing more for yourself.
Inaccuracies in assessment – repeat process
Out of service dentistry issues

Purple LIG

Group 1:

Clear communication to parents/carers

Family and carers are key

Group 2:

More work needs to be done on annual health checks. Reminders to GPs via the CCG health bulletin.

Carers strategy and carers Partnership Board – Flo/Andrea to feed back to group

Group 3:

Our promises - Adult services and health will make sure (page 5/6)

We think this is happening. There is an agreement about times for parents with children at school. Some staff can be flexible with their hours.

Staff share information when it is OK to share. Connect2Support will help with this. Making sure the information is accessible could be better – there is not funding often to do this.

We don’t think teams are always as good at this as they could be. My Life My way gives everyone the chance to be involved in support planning so this will help.

Teams share information about what is available but some things aren’t available in some areas and this is getting better when teams tell commissioning about the gaps. It can be difficult finding information Sometimes groups have loads of information but we have not found the best way to share it. Connect2Support might help with this. GP’s don’t always know what is available.

Yes and No. sometimes they are. Teams have to work with carers. Teams get more compliments about good work than complaints. My Life My way will make this happen more.

We think we might miss out finding out what young carers think sometimes but we are getting better at checking if they are young carers supporting people.

We have got a LIG/Hants LD PB und the LD plan. People have visited Parliament, they have “meet the team” days and there are events for people to find out more and have a say. Cllr Fairhurst is our LDPB chair and can listen to carers and make things change.

Some people with LD are now looking after parents. They are not known to Adult services. It needs to be flagged up with surgeries too. there is more pressure now than ever before.

LD framework did not reflect personalisation (from 200 providers to 40). People have been offered direct payment instead. Family members are spending time to support people with learning disabilities.
We need clear information in particular assessment support, how to appeal and complain (flowchart of some sort please)
Carers and families should be put on a mailing list so that they know what is going on in their locality. Note: AIS does not allow to send emails out to everyone. Libraries and group can pass on information. Each LIG could set up their own email account and get feedback this way.
Carers need meaningful information
Charging policies and paying for care consultation: has everyone had a letter yet? consultations should be in easy read. Equal ops.
Lobby
Supportive communities: come to the LIG?

Orange LIG

The word respite does not appear anywhere
The assessment report going to panel does not get given to the parents beforehand. It can lead to a lot of errors and concerns.
Parents generally should be kept informed. Most parents will have an interest in their child whatever how old they are. Launchpad, please keep the parents informed even if there is not much news
Not sure if equal partners
People should use complaint procedure if not happy
Families need to be included if they wise
Page 6: community learning does not always know
Young carers: what is happening?
Page 7: health, magic number is 40!

Green LIG

service users:

please speak to me if I live at home… then check with mum about meeting
police still help us with Hate crime. Victim to understand process
LD team have a pack of information available in areas. Some people cannot look on the internet.
Help transition between child and adults.

Parents/carers and professionals:

Government survey sent to groups (thanks Judith)
Supporting carers and families is a national issue. Not just Hampshire
Some parents are worn out
Respite is needed
Carers assessment is not affective. Everyone should get one but not everyone knows about it.
Carers strategy: see Emma Dyer at HCC
Is there advocacy for parents/carers?
Community teams: some people are better at giving information and local services. The Havant team is good.
Connect-to-support website coming up in Hampshire

Notes from Judith Leslie-Smith (parent/carer rep for Green LIG)

Hi, I am the carer for the green LIG and in our discussion on the chapter 8 we were of the general opinion that points raised in the chapter while appreciated they were only minor tweaks to existing arrangements and that the lack of support for long term unpaid carers was totally inadequate and did not respond to their needs.

Examples given for ‘Support” were a regular one day off respite together with a two weeks break to allow carers and the rest of the family to have a holiday break together. No recognition was ever given that a carer might wish to pursue a career or even hold down a part time job. Caring was a full time commitment for life. We recognised that changes in attitude towards the 6 million carers, requires government acceptance and funding but that without strong local governmental support this would never become recognised as an ‘acceptable’ 'policy.,

In addition to this one carer suggested that an ANNUAL carer’s review should become policy so that the on-going caring responsibilities could be monitored in case of changes and increased support needs. It was observed that from personal experience no practical support was offered until the situation became critical. Several carers wondered if this was a gender issue as when there was a male surviving carer more seemed to be put in place than if the remaining carer was female.

On a more general note and as result of further conversations with parents of our Kingsley Carers Group in addition to the recent Green LIG group, I would like to add that with the emphasis of the Transformation 2017 of “Enablement” and an “asset based” assessment process which relies on:

What an individual can do for themselves

What the family can do for them

What the community can provide

With a paid for service being a “last resort”

It does little to give value to, or acknowledgement of, what families are already providing. Many worry that their already pressurised life will be put under greater pressure because they will be expected to input more when there is no more to give!!.

Blue LIG

Assessment being made without the help of advocacy for people with complex needs. Potentially unlawful so being reviewed.

What is happening to safer place scheme?

Figures on Mate crime? More visibility of the police in the community

Poor communication and lack of communication to parents/carers. Most parents want to be involved. It is a small minority of case that do not wish parents to be involved.

Inform carers of events. Some carers do not have computers so paper form/letters are best.

AIS: adult service system – clients are filed on line. There is a lot of information but Adult services rely on people to give the correct information (address, mobile phones)

A pack for carers would be good.

More information sent to carers about carers assessment.

Timings are important. Let the carer know and make sure the appointments are suitable to everyone.

Young carers can have advocacy for an assessment but Amanda said that so far, there has not been a single referral.

Role of staff to work on Saturdays for assessment. Marcia was involved in the interview of the new director for adult services. Things are changing but it takes time.

Role of health to provide some flexibility. How do we get the GP register to get information on everyone? Some GPs do not have the same system as everyone else.

Adult services/health and children services: loads of the way. My Life My Way. Transition to be robust

Advocacy:

Parents at the LIGs did not have involvement with advocacy as they advocate for their own children. They could not comment.

Newsletter would be good.

Yellow LIG

Carers time is precious.
My spare time is taken dealing with problems. Parents have other things to do too.
Assessments should be right. There are always inaccuracies in assessments, and sometimes, big mistakes are made.
Accurate history of the child on file. If the background information is right, why rewrite everything?
Meetings (reviews) please give more notice.
Parents want to be involved in the reviews. Please send information to the parents too. they act as advocates.
The contact centre is so impersonal.
Health (dentistry) is a battle.

Hampshire Learning Disabilities Plan- Carer consultation

The Group looked at the following issues.

1)Is the plan working for you?

2)Is the plan working for people with Learning Disabilities?

The LD plan has been in place over two years now and quite a few issues have arisen from it.

The plan doesn’t always focus on the smaller changes to a person’s life that the plan and the new framework have created such as the wish to keep the same support worker and provider.
It would appear that HCC may not have created the LD framework to support people with LD as it is shown that it is easier (and more cost effective) to have 40 providers than 200+ and this does not seem to be in line with the Plan or personalisation.
If people do not want to use the new providers their only option is to use Direct Payments which involves managing the money and support themselves which is a lot of extra work and pressure on the shoulders of family carers, the majority of whom already support their family member several hours per week at no cost to HCC.
There are big inconsistences in amount of support/respite/rights and information about services given to family carers – seems to be “he/she who shouts loudest gets the most”
Many family carers provide support for more than “normal working hours” per week, a few can get carers allowance for an adult that works out at £2.66 per hour, but does not include holiday pay, and they can only earn an additional £110 per week before the allowance is reduced.
There needs to be transparency and there needs to be the same rates/ support/information for all carers.

Case Study 1

I received no information or support from HCC and have only managed to get a diagnosis for my daughter (age 20) a year ago. There is also no appeal process for refusal of support.
When an assessment goes to panel and is refused there is no information to tell you what you can do next to appeal this decision.
When people are offered respite support they are often told that the person they care for has to go away from home for up to three weeks instead of having the option of support within the home.
I have also never seen or been told about the Learning Disability Plan until now/workshops or how I could be involved.

This Case study was not an isolated case, so suggestions for things to improve the situation

Clear information about, who to contact for assessments/support.

(The Contact Centre is long winded, will not always transfer you to Social worker unless you are current case and have a direct line number). We know Social workers cannot keep “cases open” but every service users name must be on the system, so Contact Centre staff could transfer the family carer to the Duty Social worker at the team their son or daughter last had contact with. Family carers need support to continue to care and to save the Department money, they will only contact the Social Worker if there is an issue.

Clear guidelines on the process and now to appeal/complain are needed, this could be in easy read, so everyone who accesses the Department could use the same Guidelines/Flow chart.
Every family carer needs to know about the Learning Disability Plan, their Local Implementation group, workshops, The Carers Strategy Group, new initiatives e.g. (My Life My Way), information days, like 16 November and 28 November. – 12 Family Carers present only 3 knew about these events prior to day.

Community LD teams must have a current and passed records of people they have supported. Most families would welcome a “information to share” form so that they could be advised of what is going on, via email, so they can be involved.

4.How is information distributed to hard to reach groups such as the Gypsy community?

5.Need information and support for older parent carers who have been caring for all their lives and will have to hand on their court of protection at some point.

COMMUNICATION is KEY –over the years HCC have got it wrong several times by not telling families what is going on – yet by involving families early in the process, appropriate, cost effect, needs led services will result for people with learning disabilities enabling them to have a better quality of life in the community, without any additional cost or in some cases less cost to HCC.

Case Study 2

Often “service user criteria” is used even to get an assessment - some people are vulnerable but do not meet the criteria or parents have to actually refuse to care for them any longer in order to get any support at all. Quite often the only way in is to mention or quote a “Safeguarding” concern. This approach is not okay and needs to be changed.

Suggestion of things could improve above the situation

Make available, clear information on the criteria for services
Publish list of allocation of hours/overnight care available to family carers who are still supporting their son or daughter 24/7.
Flexibility could be quoted e.g. 7 to 21 nights per year or 5 - 10 hours per week, depending on assessment of whole family’s needs.
Under the new Care Act Carers have a right to an assessment to work/continue in education/have leisure opportunities/and a break from caring and to have their needs met.
Holistic whole family assessments should follow on after an independent facilitated “Person Centred Plan” this could result in a much better outcome for all members of the family and at less cost to HCC.
How many whole family assessments have HCC carried out in the last six months?
How many carers assessments have been completed/or are under way since 1 April 2015, how many have resulted in increased services for either themselves or their sons or daughters?

Information about local services and support – its say this will be available in the LD Plan

Case Study 3 - Parent carers do not always know or are given access to information on local groups/services and support.

Case Study 4 - If a person is funded by health they don’t always have immediate access to services, health pay the services directly and the carers and cared for are given nothing in writing to support their claim to these services. They are also taken off the register for support from Adult Services and are told they have to go through assessment all over again as they have no knowledge of prior support even though this person has had support from adult services prior to being transferred to health.

Case Study 5 - I have to take day off work to attend events - if I know they are on – a lot of family carers still need to work, how can they be involved?

Suggestion of things could improve above the situation

Parent Voice have website of groups, activities, for young people/parents up to 25, when will this or another site be available for adults (people over 25)? Information needs to be equitable whatever your age/disability.
We need clear criteria from adult services for people applying for care. Why do you have to prove a risk due to vulnerability to start the process for extra support?
In the LD Plan Health and Adult services have made Joint Promises, yet in practice if funding is by Continuing Health Care (CHC) access to social care/information is not forthcoming.
Under the new pilot “My Life My Way” allows access to personal budgets – Health, education and Social Care. We understand there are only 5 families on the pilot when will it be rolled out?
When will people under health get assessed for adult services support?
Do HCC know how many people with LD living in Hampshire they provide services for? How many people are funded as “Out of County” placements? and the annual cost for each service.
Do you have a database of family carers so they can be sent relevant information re events, change of services, new services, web sites etc.?
The trouble is that parents get overloaded all the time, they have their own life to live and often have to support other family members as well as their sons or daughters.
Often people have to take a day off to attend course/ consultation events, can consultation be “on line” for working parents to be involved as well as physically having to attend?

HEALTH