Personal Health Budget: Is there anyone with autism without intellectual impairment who has a PHB.

Camellia

Hi

Is there anyone out there with autism who is neurotypical passing (or somewhat so) who has succeeded in getting a PHB and would be willing to share their experience?  

I have autism, dyspraxia, bipolar 2, and am currently seeking assessments for ADHD, Non Verbal Learning Disorder (where the person has average to above average spoken language skills but has a lot of trouble with visuospatial skills and other skills related to visual processing) along Executive Dysgraphia (where one has difficulty organising their thoughts for writing). 

I would like to have a PHB to help me get a full picture diagnosis and professional recommended reasonable adjustments as well as OT and specialist autism services input for things such as help with getting me set up with specialist computer software so that I may be able to try and work or study again - have tried before (had childhood diagnosis withheld) and it has resulted in a disaster when what was expected of me (without any support) became too much. 

It is not fair that I as an autistic woman (who didn’t get the help I needed as a child) should not get the help I need as an adult to succeed with work or study because I do not have an IQ below 70. There are no specialist autism services where I live and Right to Choose and Independent Funding Requests are a very involved process that is by no means certain of getting me the help I need. 

It seems there is only help for this sort of thing if you are a school or college student or you have gainful employment. I need the support in place to even be in a position to get some sort of paid work that is a better fit for me. 

surfygoose

I don’t know exactly for the things you need but there is funding for social care for autism without learning disability. I don’t know what neurotypical passing means but I have autism and not a low IQ. We don’t have autism service that funds it here but if you have autism and under certain IQ learning disability service lays and if autism and higher IQ then mental health service pays. I have funding for living in a care home for autism (actually waiting at the moment to move to my new one), there are people with learning disabilities also, everybody compatible based on support needs. I have 1ju hours per day one to one support funded and shared night staff so there is definitely funding for higher IQ autistics available but I don’t know about personal health budgets. I don’t know what they are. I had direct payments in the past for employing PAs for a short while. I didn’t understand it though and was r the most suitable support for me but I know it’s something they offer to some people if they can manage their support that way or if they can live at home then also home care package. I don’t know about specialist equipment. Some things they might support you to get the right benefits being claimed so you can afford to buy your own equipment or I think there are some grants available for disabled equipment. Also maybe the nhs gives some essential equipment. I don’t know lots about that. I’ve had video monitor provided for me to be watched overnight and I didn’t have to pay for that so I don’t know if that would be similar. I’m not sure if communication devices are funded or maybe software. I have Proloquo4Text but I paid for it myself, couldn’t say for sure if it could be funded or not though because we didn’t ask as I was able to afford the app. I think you just ask for a needs assessment first and then they can work out with you what support you need. I think a lot of things if they are like schemes for support in to access to work and stuff are free and do help get equipment. Like if you get offered a job then you can contact Access For Work actually and they do help with things. Also lots of training is free and free coaching for finding work either paid or volunteering.  Sorry I’m not sure I’m being very helpful. Hopefully someone more knowledgeable will see the post.

Camellia

Thanks so much @smurfy goose.

“ if you have autism and under certain IQ learning disability service pays and if autism and higher IQ then mental health service pays”.

This comment of yours is particularly helpful and alludes to the issue - no proper autism services for post diagnostic support if you have an IQ above 70 even if you have multiple specific learning impairments. 

I have been trying to get a needs assessment for these past two years. 

The issue I have is they meet me for the in depth needs assessment discussion (this has now happened twice) then they have kept fobbing me off and/or ignoring any communication from myself. 

I literally haven’t even so much as seen a draft report of the assessment or a proposed support plan. The excuse given by the first person is he didn’t have expertise in autism (he was an aged care OT). The assessments get aborted basically (for want of a better word). 

I had a history of having social care funding for my mental health (for my bipolar 2) for years before this but as soon as I got my NHS autism diagnosis about 3 years ago the community mental health team discharged me (as if my need for support with my bipolar 2 somehow magically disappears once I get an autism diagnosis). 

I need social care funding for continued input with my mental health and safeguarding and to get a PA back (used to have one for a few hours a week to help with advocacy) - have had a threatening and abusive neighbour and also someone attempt to cuckoo me in my house (I live alone) as well as help with social inclusion whilst I’d like a personal health budget for things that social care do not usually provide to do with both my autism and some of my other neurodivergences I explained about in my first post here so a personal health budget (if I can get one) would be used for things such as out of area autism / ND specialist OT / coaching, sensory processing needs help and help getting to the bottom of, mitigating for and compensating for some of my visual processing issues. There are no services for this sort of specialist input locally unfortunately. 

Basically I’d like an integrated personal budget (social care) and a personal health budget (NHS) to cover all of my needs. 

By neurotypical passing - I am referring to how autism can be a largely invisible disability making some autistic people indistinguishable from a non autistic person (in some people’s eyes) - I compensate and mask my autism a lot and have very strong spoken language skills in terms of verbal fluency and complex sentence structure etc (but not organising my thoughts in real time so much). Nobody sees the struggle with all the other things. 

surfygoose

I hope you manage to get your needs assessment again. That’s unfair that you got discharged from mental health service and lost your PA.

I just asked my parents what cuckooing is and they said like what happened to the person in line of duty with the learning disability when they used his house for drugs and stuff. I assume they got that right? I’m learning a new phrase everyday. That sounds horrible if that’s what it is. Did you tell the police?

Thank you for explaining the neurotypical passing. I like learning the terms to understand them in cases it comes up again somewhere.

that all sounds very complicated the different types of budgets but I hope that you manage to get them sorted out. I think it might be the cmht’s responsibility to look after autism like here so maybe you can ask to be referred back to them. Also do you have a social worker to help organise support?

Camellia

Hi @surfygoose
It was a person who would not leave my house (effectively squatting in my house) and I was at risk of being locked out of my own house every time I dared to leave. I think free accommodation was the main motivation in this instance. I think this may also meet the criteria for cuckooing but would need to double check to be sure. 

Yes I did tell the police - but because I am not registered on the police computer system as vulnerable they would not intervene as I let the person in! They ignored completely that I am autistic, living on my own and had asked the person to leave - but they wouldn’t. I had to resort to some extreme measures in the end (long story but very off topic so will refrain from writing a novel). 

I do not have an allocated social worker - the social worker who conducted the assessment is “ignoring” all my attempts to communicate with her and it has been going on for weeks. 

I am literally going to have to look into options such as making a formal complaint as well as even asking to use a private out of area OT / social worker / brokerage service with expertise given that my local council have demonstrated over the past 18 months or so that they cannot even produce an initial written draft of my assessment. I fortunately have an advocacy service supporting me and will be trying to get in contact with the disability law service in London regarding this). 

I am also trying to use Right to Choose and Independent Funding requests for some of the stuff social services don’t provide but will need my GP’s support 🤞

Thank you so much for your response. I have felt very alone and up against it as my family are based overseas. 

forgoodnesssake

To get Health PHB you need to meet high enough criteria in the 11 Domains, and that can be very hard to do!  If you haven't already (and apologies if you know all this!) look at this to see if you feel you'd meet enough of the criteria.  https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool.

And I'm sorry to sound pretty negative but re "I would like to have a PHB to help me get a full picture diagnosis and professional recommended reasonable adjustments as well as OT and specialist autism services input for things such as help with getting me set up with specialist computer software so that I may be able to try and work or study again.."  in our experience this just isn't what happens.  

My son (CP not Autism) has a PHB and without going into all the details, there is no clinical oversight at all and certainly it does not appear to bring together a team of professionals in a joined up way.   The system is pretty much totally unfit for purpose and most areas of the country seem to be operating in much the same way as ours.  Which is so frustrating as the basic idea is really good.

But it's certainly worth looking at the criteria in the DST and talking to a health professional about it (though again in many places the GP is not actually involved much at all, and actually seems to know very little bout it...which is ludicrous given that they are the gateway to most NHS services!) 

Camellia

@forgoodnesssake
Thanks so much for your very helpful response.  I had just come across something on the NHS website about PHBs possibly being extended to also include individuals with autism. This is quite recent and is in its infancy. I will spend some time looking in detail into the continuing healthcare decision support tool link you sent to explore whether or not I may have a remote chance of meeting their eligibility threshold. 

It is a shame I am having to resort to looking at every possible avenue - such as personal health budgets PHBs, Right to Choose RTC or Independent Funding Requests IFRs as my local area has next to no specialist autism support services for adults without significant intellectual impairment post diagnosis. 

What I am dealing with is issues pertaining to my disability being invisible- to others who do not have specialist training in more complex presentations of neurodivergence. 

I need proper support to get into gainful employment and for that I need reasonable adjustments based on a full picture profile of my various forms of neurodivergence. 

Do you have any sort of advocacy or disability law advice service helping you get what your son needs? 

I ask because there are advocacy services here for care act matters but nothing I am aware of for PHBs. 

Kimmeka

@Camellia

Hows it going? Any luck acessing a Personal Budget? As I have a similar diagnosis to you and have a Personal Care Budget but cant use it (long story am about to share a post in it). Like you I also think I need an intergrated budget. I am late diagnosed Adhd , Autistic, Dyslexia etc and mental health issues due to missed diagnosis. The system is a nightmare to navigate - I a have post to share so keep an eye out.

All the best of luck and take care🌻

Camellia

Hi Kimmeka,

Thank you for asking.

I am now being assessed for a personal health budget with a view to having an integrated budget. It has taken a massive fight over some years to get to this stage. I think it is very worth it though as once it is in place it should hopefully continue going forward.

When I was last on here I was in the process of making a very lengthy formal complaint (43 separate points) and made it clear I would be going to the ombudsman/judicial review if the matter could not be resolved. I made it clear that the council could be in breach of the care act, as per legal advice, with regards to a couple of issues.

I concluded by putting forward a proposal containing about 5 key points as a way of addressing the stalemate as I did not wish to get embroiled in historical issues with regards to my care and support plan assessment not being done as it should have been.

This has admittedly hijacked my life and has been exhausting for a good couple of years.

My assessment is now largely in the process of being redone by the head of social services-mental health section for my local area. I am suddenly getting various needs formally recognised which were outright dismissed before.

The chief social worker is attempting to pull some strings to see if I can get an expedited PHB assessment to link in with their current assessment process with me.

The council is now also seemingly agreeable to my request for an ISF - an independent service fund so will be fingers crossed, the first person in my area to have one.

This has been a stupid amount of work.

Happy to provide info / pointers for people to google information for themselves but that is about my limit.

Critical to being able to do all of this -

1. I have attended online lectures by Belinda SCHWER of CASCAIDr who is a solicitor with expertise in the care act which has helped me get a better feel for public law as it applies to the Care Act.

2. I have attended workshops by Inclision London on their real care tool box. Basically a framework and step by step process to help service users do their own self completed needs assessment.

3. Familiarising myself with Care Act guidance - can get a version of the care act written more in plain English on the net.

4. Free Legal advice through Disability Rights UK - I have posted on here before regarding this.

5. Taking it upon myself to get to voice my concerns to local commissioners - integrated care board meetings etc. Your local Health Watch may be willing to support you to do this

6. I applied for a grant through Imagineer and got it - to help me with the care plan process. Was matched up with a lady called Natalie who has 20 plus years experience in social services and is neurodivergent herself and is very clued up on both PBs and PHBs.

Once the grant ran out I continued to pay her myself although challenging to afford given I am on benefits. A matter of priorities and trade offs. Without her input would not be where I am with this. I hope to eventually get some of this reimbursed as she has effectively acted as a PA for bureaucracy matters albeit working remotely.

7. getting help through a council funded advocacy service can help - although I have struggled massively to get suitable such advocacy assistance in the first place given the fact I am not intellectually impaired.

Hope that this is of some help.

Amaya_Ringo

After I was diagnosed I was told there wasn't any follow up service. That was in 2005. I did actually have some support from the LA for a while after that, then they cut the funding so it shut down and to date I don't know what services exist now for people like me without an intellectual impairment.

When I was at university my Disabled Student Allowance paid for me to have a mentor who supported me with various adjustments, like separate exam conditions, and so on. But since then I am now back to no support whatsoever. I have looked but nothing exists locally.

There may well be services and options further afield/with more complex planning but I have pretty severely impaired logistical skills and executive function which means planning and organising things are a problem for me. I find it hard to connect the dots from a to b to c to get to a final resolution, so anything that isn't really clear and obvious has me falling at the first hurdle.

Plus, I don't want to end up dumped into MH services, because they are overstretched and I don't need them. I don't have a MH condition. I have autism. :/