Flying the nest

During 2015 Heidi and I started looking for a supported living home/flat that she could move to.

We were shown round a group home, which she decided was not for her.  We were told about flats where she would have her own front door but staff from an agency (XXX) would support her for as many hours as she needed.  We casually asked them to let us know if any flats became available.

In October 2015 Suzie went off to university, we had just about got used to being 3 at home when a phone call (in December) from XXX informed us of an available flat in the same block as a friend of Heidi’s.

Heidi was only 20. Although I had always planned for this, I had assumed she would be about 22 plus. I didn’t feel ready for her leaving.  Heidi of course was 100% positive and excitedly looked round the flat.  She loved it. 

I immediately googled whether she would still be able to get to work by bus from the flat – partly hoping that the journey would be impossible. I was shocked to find that it cut her journey down by over half!  Drat - I couldn’t use that as a reason.

Heidi then made a list of pros and cons – a pro “peace and quiet from mum and dad” , followed by the con “too quiet without mum and dad”.   The pros won and December saw Heidi signing rental agreements, buying furniture and decorating the flat for Christmas (even though she wasn’t moving in till after Christmas!)

As assessment was done by the social worker and XXX and hours agreed for staff to support her.  She was invited by XXX to interview possible support staff.  It was at this meeting that I had my first misgivings about XXX – the interviewees and XXX seemed to have a different view on independent living than us!  (We found out later that the interviews were not just for Heidi as we had been informed but for general support work at XXX). 

So on 29^th December in she moved.  She slept like a log, I didn’t!  Heidi loved being in the flat, offering everyone who visited, (including the delivery men and the man who came to move the “spy hole” so titch could see who was at the door) a drink and biscuits. 

I noticed when I visited that the staff were busy doing the housekeeping jobs and Heidi was very happy to inform me that this was the norm and she spent her hours on facebook and watching TV.

It became apparent very soon that XXX staff’s idea of independent living was a million miles away from ours.  The management didn’t seem too bothered about our request for Heidi to do her jobs – so very soon Heidi had lost lots of the skills that her previous staff had worked so hard on.

Heidi rarely had the same staff so had to get used to the different ways staff worked.  There were communication issues caused by the staff not listening to us or Heidi. 

The staff spent most of their shifts on their phones and all the exciting outings and socials with her neighbours that we had been promised did not materialize.  The way XXX worked did not fit in with Heidi’s social life and often she had to return from her outings early, to fit in with the staff, rather than the other way round.

After a few months of working with XXX we were exhausted with constant battles and discussed alternatives with her social worker.  The solution was for us to use Heidi’s direct payments to pay staff that I would employ to support her. 

Heidi was fully involved in the interview process and the amazing Millie was employed, Millie was an Occupational Therapy student and she used all her OT skills to good effect.  Heidi was fully involved in cooking, cleaning, shopping etc and systems put in place to help Heidi remember her independent living skills.  For example: a schedule for housework, reminders to wash properly and clean teeth, things to check before you left the flat (Are high heels suitable for 6 inches of snow?)

So my advice is to check out the agency much more thoroughly than we did.  Establish what they think independence means.  Talk to the staff who will be working with your adult child to ensure that you are on the same page as them, not a completely different book like we were!

More soon about how Millie and Heidi’s other staff support her and how I pay staff etc.

 

 

Benefits, DLA/PIP/ESA ….a mine field!

 

The blog you have all been longing for!  Quite topical for me, as today I spent 18 minutes listening to the Department of Work and Pensions (DWP) “hold music” and then 7 minutes speaking to an actual human – and even better a human who knew her stuff and was efficient! 

This is the first time in 26 years – so I’ll take the win!

Thankfully Heidi has been on Disability Living Allowance (DLA) since she was about 2 months old and changed to Personal Independence payment (PIP) when she turned 25 (should have been when she was 18 but we’ll gloss over that).  Over the years we have used her DLA and PIP for a variety of things – the general extra costs that having a child with a disability entails, but also I have paid someone to take her to an activity or for her to attend events.  (This was before we had Direct Payments to pay staff, it was just an informal arrangement between family or friends).

 

When she turned 18, we had the delight of hearing all about benefits. thankfully we had a very helpful person at the “Job Shop” explain about which benefits Heidi would be entitled to and the rules accompanying the benefit. 

 

The most important rule is that any savings in the claimant’s name must not exceed £6000.  If they do then the benefit is reduced.  So Heidi bought a few treats and outings with her savings to get below the limit.  The benefit she claims is called Employment and Support Allowance (ESA).  This is paid to people who have a disability or health condition which affects how much you can work.  The claimant must not work more than 16 hours a week or earn more than £143 a week.   

The payment is received every 2 weeks and entitles claimants to free prescriptions, dentist treatment, opticians, housing benefit and council tax rebate…so ESA is definitely worth getting.

Your GP will be sent a letter asking for confirmation of the claimant’s disability – this was accepted but repeated 3 months later.  A short note from the GP explaining that “Down’s Syndrome is a life long condition and Heidi would not be losing her extra chromosome any time soon” seemed to satisfy the DWP as her disability has not been queried since.

 

Of course, claiming ESA involves lots of paperwork and copies of bank statements but unless a change in circumstances happens then it just keeps on coming.  But the £6000 limit on savings is really important – in 2020 I was asked to send in bank statements for the last 4 years for Heidi.  I did so and it was noted that for 3 months in 2017 she had been over the threshold by about £50 and so they penalized her for my misdemeanor in 2020. 

 

I say “my misdemeanor” because about the same time as claiming ESA I became Heidi’s “DWP appointee” which meant that I could speak on her behalf to DWP, housing benefit and banks.  For banks I had to apply separately and get Heidi’s permission for them to speak to me; permission which she was very keen to give as forms/banks/benefits are “boring stuff that mum sorts out”. 

 

Becoming a DWP appointee was a relatively painless process involving a visit from a DWP official who checked my suitability to fill out endless forms and my bank statements to see that I was an honest person. 

 

At the same time as all of this delightful form filling was going on, we opened a bank account for Heidi.  Up until this point, she had only had a building society account.  We tried various ways to limit her spending – contactless payment was one of the first things to be removed!  We settled on two joint accounts for me and Heidi.  One a savings account (not that much saving went on) and one a cash account, Heidi had cards for both of these accounts but only knew the PIN for the cash account.  Each week she had £100 (of her money) paid into her cash account for the next week’s spending, if she spent it all then she learnt the hard way.  I knew the PIN for the savings account and would have given this to Heidi if she was in an emergency situation and needed money.  Thankfully this has never happened. 

 

The advantage of the joint accounts meant that I had access to the money and can do transfers, payments, standing orders and direct debits to help Heidi.  I can also see when Heidi (and now James)  waste their money and need reminding (again) of the right use of their money!  (Budgeting and banking have proved the term “learns things more slowly than others” over and over again)

 

Since their marriage James and Heidi have got a joint account, which I can access to help them as above.

 

Next time – moving out!

After school....what next?

 

Leaving school seems to be a time when families are often left to “grapple around in the dark” for provision.  My best advice would be to ask for a Social worker (SW) before they leave school. 

As with most things, SW’s are a mixed bag.  We were fortunate as our SW was willing to be creative and think outside the box.  She did a “needs and well-being assessment” on Heidi and discussed Direct Payments (DP’s). This is money paid to the disabled person or a family member and can be used for a variety of things.  We did not know at  the time, but DP’s are available to children as well.  So if there are things that your child would love to do without you, or you need respite, I recommend applying for DP’s. 

According to our SW we used DP’s in an innovative and creative way – so much so that she had to check with her manager that it was allowed. 

Remember, I had three other children at home most of the time and my patience is small.  When it comes to watching Heidi cook it’s even smaller, so my best intentions of teaching cooking, cleaning, washing and other independence skills very soon went out of the window!  So we used DPs to employ someone one morning a week, when she learnt to cook (that was Monday evening’s dinner sorted), food shop, clean and other household tips that I never knew existed! 

The SW works out the number of hours the person is entitled to, a bank account just for DP’s is set up and the money is paid by the council to the account.  I had to be vetted and shown the system but Penderels Trust do all the contracts, time sheets and pay slips.  They also have a Personal Assistant (PA) finder service, where PA’s advertise themselves and also where you can advertise your need for a PA.  Penderels work in lots of areas in the country but the SW should know of a service local to you.

Heidi preferred to call her staff “Future Guides”, a name created by Heidi and her peers at an advocacy group – the person “Guides them now and into the future”.  Most of the people we have employed have been friends or friends of friends – thankfully all have remained friends.  I also employ family members as casual staff members – this is allowed as long as they do not live with the person they are supporting.

Our job description and interview were done by Heidi.  The job description focused on what she could do and what she needed help with but also the fun things that she hoped she would do with her Future Guides. 

The interviews were hilarious with the most important questions being which football team they supported and if they would help her to attend a Justin Beiber concert.

I have heard of people using DP’s for a variety of activities – respite, shopping and cinema trips, accompanying people to clubs, church, pubs and night clubs – whatever the person wants to go to. 

A word of advice; keep the activities updated.  Once they can go to the cinema without staff, for example, move on to going to the gym, shops and so on.

Suzie was a Future Guide for a friend; activities ranging from learning to cook vegetarian meals to helping him learn the bus route and going to the gym. 

However, this was only one morning a week sorted.  Heidi was still very keen to work in a hair salon.  The school had suggested the mainstream massive college where Heidi could do an NVQ in hairdressing but thankfully we found a small college with a training salon. 

She loved the NVQ courses in hairdressing and customer service and enjoyed getting to know the other students and staff.

On other days she did voluntary work at a charity shop and a café.

There are other options too: mainstream FE college with or without a special education unit, or moving to a residential college where they will learn hands on independent living skills and complete a course which will help them find work at the end.

Thankfully Heidi left school before Education Health Care Plans were introduced, but from other people’s experiences I would suggest starting their after school Plan in about year 10.  Then there might be some chance of it being ready when they leave school!

 And then there’s benefits……will save that delight until next time.

 

Snipping the apron strings…bit by bit

 Snipping the apron strings…bit by bit

 ….it’s got to be done so my advice would be to start early.  When Heidi was very young we taught her how to queue (and discouraged kind people letting her jump the queue as that’s not going to happen as she gets older), how to find the toilets, how to ask for things from shop workers.  We would allow her to try these things accompanied at first but we gradually stood back and let her do things.

If people asked one of us what she wanted, we just told Heidi to answer and stood further back.  This is an ongoing problem but more and more people are realizing that she can speak for herself (even though she is the size of a 10 year old!)

This might be hard at first but remember the long game – independence.  This will look different for all our children but gentle snipping of the strings will help them feel more independent and prepared to take on the world!

We always encouraged age-appropriate behaviour, clothes, bags and lunch boxes.  If we want her to be treated “normally” then we don’t want her sticking out.  I admit this is not easy when she wants trendy clothes and high heels – still hard when she is 26 and a size 3 shoe!  (Especially when my sewing skills stretch to sewing on a button – thankfully Suzie’s are a lot better)

I was totally fed up of watching Disney films and was delighted to gradually allow Heidi to go to the cinema with Suzie, who still enjoyed them.  The first time I watched another film at the same time, so they knew they could find me easily.  The next time I sat in a nearby coffee shop and then eventually I let them go on the bus together to town.   (I was very adept at hiding in bushes watching them cross the road and get on the bus).  Suzie was paid for her kindness.  Win all round!

I know that it’s hard to allow our youngsters their freedom and for lots it’s much harder than it was for me and Heidi, but there are solutions.  You could use your young person’s DLA or PIP money to pay a friend to take them.  Yes, it’s not independence but it’s preparing them for the days when you aren’t able to do it.  The sibling or friend can teach correct behaviour on the bus and how to look out for shops or pubs that show you are nearly at the destination.  Buying the tickets at the cinema might not be something your child could do (Heidi certainly couldn’t at first) but having watched Suzie she learnt what to do. 

(And if you think you can’t afford it buy a CEA card and the carer gets in free!)

We then moved on to the biggie – going shopping with Suzie and school friends.  The easy option would be to say “no” and just take her myself, but shopping with Heidi is a tiring business so I was more than happy to pass the buck on this one.  Though of course the first few times saw me follow at a distance and I was often seen hiding in doorways and having to explain myself to security guards or other customers.

Before the first trip Heidi and I went to a few of her favourite shops and cafes.  I explained that she would soon be going shopping without an adult and if she had any problems could she come to them.  Each one was delighted to help.  She never used their services but remains good friends with those shopkeepers (with most of the shopkeepers and café owners in town actually.)

After a few times of following them around at a distance, I then said I would be in a particular café and they could find me if they needed me.

They never did, and things that I had worried about were sorted out by themselves or occasionally asking people for help. 

Give it a try, you won’t know how well they can manage unless you give them the opportunity.  Use friends/family to help so that they are not completely dependent on you; this will help them in the long run.  I have heard lots of times “I never thought they could do it” or “they do so much more with other people than with me”.

All of these small but important steps prepare everyone for the day when we are no longer around.

Hannah and independent living!

I have known Hannah and mum Jo for about 17 years,  Jo runs PROUD a support group for families with children who have Down Syndrome in Walsall.  Hannah has 2 younger sisters and Jo has fought for every possible provision for Hannah over her life. 

But its true to say that independent living had not been in Jo's mind for Hannah. She always told me that she hoped Hannah's sisters would care for Hannah.  Hannah has cerebral palsy and juvenile arthritis (she often needs a wheelchair) and uses makaton and pecs to communicate as she is pre-verbal. 

So this photo of Hannah leaving home show a 360 degree turnaround in Jo's thinking! 

Hannah has just moved into a beautiful home with 5 other young people and is now attending college and learning life skills. 

She will have 24/7 support and already Jo has received regular messages from the staff showing Hannah having a great time!

Her mum Jo and I hope that seeing Hannah's story encourages other families to make this step.

Have fun Hannah!

To travel train or not to travel train?

 

At first the council were unwilling to provide transport to and from school so tiger mum came into action and after a stroppy email a taxi was miraculously provided.  To save the few remnants of my sanity Heidi joined the after school homework club 3 afternoons a week and the taxi was provided for that.

At about year 9 I suggested to school that she should be travel trained to and from school by bus.  The travel trainer visited us to get to know Heidi and explain to me how training would work.  We are lucky that the bus stop is right outside the house, but the trainer taught Heidi how to keep a look out for landmarks so she knew that she was nearly at school or home.  The trainer also taught Heidi how to show her bus pass, how to behave on the bus and showing the safest (though not nearest) bus stop for return journey.  Heidi loved this independence but even after being signed off it didn’t stop me peeking from behind hedges to make sure she was safe!

I know of others who have tried travel training and may not pass to travel alone but have been passed to travel with a buddy; this is still great independence.  The young person can travel with the buddy to places that they want to go to rather than just where mum/dad want to take them.

I have heard parents’ concerns about “stranger danger” incidents on buses and independent travelling – these are incredibly rare and teaching Heidi how to deal with them seemed safer to me than shielding her completely and not allowing her to enjoy some freedom, like her siblings and her friends.

(Though apologies to the lady who kindly told Heidi that her skirt was caught up at the back and she was showing her knickers to the world.  Heidi retorted with a loud “I don’t know you.” The lady explained that she knew me and that she was only trying to help.  Heidi sorted her skirt out and continued on her way but was not convinced that the lady was only helping!)

A repeated fear that I hear is that our youngsters could find themselves stranded without any idea how to get home.  Allowing them to travel train (to their ability) means that they would at least know the basics if they were stranded.  It might mean that you follow them at a distance a few times to allay your fears but let them try it – they will probably surprise you.

I have never had to rescue Heidi from the opposite side of the city, because she got on the number 10 to Longford rather than the number 10 to Canley – hang your heads in shame older brothers!

 

 

Divisive issue or personal choice!

Sadly the choice of mainstream or special school is a tinder box in the Down Syndrome community, with as many opinions as there are schools.  I had volunteered in special schools and looked round our local special schools, and would quite happily have sent Heidi to them.  

However, the school the boys attended were so keen for her to join them, that we thought we would give it a go! 

We decided we would take a term at a time and reassess if necessary.  The school, especially her teaching assistant Debbie followed our lead and didn’t let Heidi off or excuse her behaviour. She repeated Reception and year 2 and so at age 13 she bade a tearful goodbye to Debbie and moved onto a mainstream secondary school. 

Of course, Heidi never made up the gap between her and her peers but school was very good at adapting the work and including her in all activities.  

From the age of 5 Heidi had wanted to be a hairdresser – the mere mention of it, had all but bald men, running a mile! 

Thankfully the school were keen for her to do a day release BTEC course in hair and beauty.  She loved this experience and the school provided a 1:1 assistant to go with her to the college for years 10 and 11.

At age 18 she left school and college with a few qualifications but more importantly had shown school communities that having Down syndrome is not something to be scared of and that different is ok! 

I still receive comments from parents saying how much their children benefitted from Heidi being in their class.

Sadly though, Joe Bloggs from class 10X has lost his chance to fulfil their shared dream of marriage!

The Bombshell

 

26 years ago, we entered the hospital ward, excited soon to be meeting our third child.  Dan (3) and Tim (18 months) were being cared for by friends.   We had refused the blood test and only had the routine 12 week scan, so the joy of our first daughter’s arrival was marred for me when I saw her tell tale almond shaped eyes.  I voiced my concern to Steve who replied that “she just has squashed new baby face!”

After a while a senior midwife confirmed my fears that she thought Heidi had Down Syndrome.  We really struggled with this and were very upset and angry. 

I spent hours looking to the future and worrying that I would never have girlie outings or watch Heidi get married!  How daft.

But even then, I vowed that she would be as independent as possible and we would do all we could to enable that.

We stressed and fretted about how Heidi would fit into family life and how it would affect the boys and whether their lives would suffer from the unwanted extra chromosome.

Independence was the last thing on our minds for the next few months as Heidi struggled to get through each 24 hours. Thankfully after her AVSD heart repair she came home from hospital but the local hospital became our regular unwelcome second home.

Suzie came along just before Heidi was 2 (yes I had a nearly 5 year old, a 3.5 year old and Heidi nearly 2) I distinctly remember Steve bringing the children to meet their new baby sister, and thinking that I had been totally mad to have another baby so soon. However, Suzie slotted into family life very well and coped with being poked and prodded by her enthusiastic older sister!  Their bond was so obvious from day one, the roles changing as Suzie overtook Heidi and learnt things with ease.  Her joy in Heidi’s achievements were over the top and sounded patronizing but they weren’t, she just knew that her “big little sister” needed that extra time and help.

We decided early on that Heidi would be treated the same as the others, according to her understanding. She would not be allowed to use Down Syndrome as an excuse for bad behaviour or for special treatment.  The other children soon noticed if we failed with this - I remember 4 year old Dan telling me that he would have been punished if he had been the perpetrator of Heidi’s latest misdemeanour! 

I knew families where elderly parents still cared for their middle aged children and was determined that Heidi would leave the nest as early as she could – my maternal gene is slightly lacking!

 

Independent living - Why? When? How?

 

Independent living - Why?  When? How?

I am starting with the hardest question, but I think the most important: Why?

It’s the scenario that none of us wants to think about - our loved child surviving us - so we put it off.  I have heard too many scary stories, so this is my main reason for the page.

Mildred (not DS) lived with her elderly parents in the same home for all of her life.  Her parents died suddenly within a few weeks of each other.  Unbeknown to Mildred’s sibling they had left the family home to her, on the condition that she looked after Mildred!

Mildred and her sibling had never really got on.  After a few months the arrangement broke down.  Mildred had lost her parents and the only home she had ever known.  Only her name is made up.

I heard this week of an unmarried sibling being expected to look after her sibling with DS.  She has given up her career because he needs so much care. 

We have all seen elderly parents walking along with their middle-aged adult with DS and wondered how that person will cope when the inevitable happens.

I have picked examples of difficult situations and I am sure that there are lots of siblings who have willingly taken on the full time care of their disabled sibling – good on them!

We know that Heidi’s siblings will look out for her. Even now if she has a problem she will go to a sibling, especially if it’s too technical for us boomers.  And for years she has gone to Suzie for fashion advice – can’t think why!   But we didn’t want them to be forced to look after her when we were gone.

 

This is a very sombre start to a blog but hopefully it will help you to plan ahead! 

I promise it will get happier – it’s about Heidi so it’s got to hasn’t it?