I decided early on that all adopted children should come with a fully paid-up live-in nanny and cleaner. Oh yes, and handyman or woman to do the running repairs to the house from all those temper-tantrums and bust-ups. Unfortunately they don’t, but some do come with a means-tested adoption allowance (in the UK). If you think you need this, it’s probably easier to secure before rather than after the adoption order is finalised. If, as in our case, the children arrive in your home as supposedly ‘normal’ healthy infants, it is unlikely that any resources other than a chat-group organised by your adoption agency, will be provided. Some of the organisations we have found useful have been listed on the Links page. When it comes down to it the most useful thing is money. Many if not most children adopted from care have some additional needs, and these can be costly in time, effort and, yes, money. The biggest expense by far has been private schooling as the education the children needed just isn’t provided by the state-sector. We tried three times to get a Statement (of Special Educational Needs) for Jo, who has FASD, but on appeal were told that we just wanted a ‘de-lux education’. It was a very dispiriting experience that certainly did not put the needs of the child first. With hindsight, a wonderful thing, we should have paid-out even more for a legal representative, as the LEA were represented by a solicitor and the panel clearly ate out of his hands. However, as we know from other parents, getting a Statement would not necessarily have resulted in any financial help with Jo’s education, which is what were were after, so perhaps it didn’t make much difference in the end. Her school and a charitable trust for adopted children (The Athlone Trust) do give us some help with fees, so its worth asking and searching.
Social workers are not very good on the whole at advising on what benefits adoptive families might be entitled to, so here are the ones we have found useful.
Contact a Family This is where we started. Contact a family are a charity giving advice over the telephone to families with children with disabilities. We turned to them initially for advice when Jo was diagnosed with FASD (foetal alcohol spectrum disorder) at about the age of 8, but they have also been very helpful with Billy, who we would not necessarily have thought of as having a disability. All the benefits below were suggested by Contact a Family and they advised on filling in the forms as well as which benefits to apply for. This advice and the resulting financial help probably made more difference to the stability of the adoptive placements than any social work interventions.
Disability Living Allowance for Children – This is quite a generous allowance paid monthly. It is made up of a care and a mobility component. The high level of supervision Jo needs, including when travelling (we used to need an adult next to her in the car in case she opened the doors or kicked-off, and still do at times), meant that she qualified for the higher care and mobility rate. This benefit lasts up to the the age of 16.
Personal Independence Payment (PIP) – This is a new benefit and replaces DLA (Disability Living Allowance) from the age of 16 in pilot areas of England and Wales, soon to be rolled out to the whole country. The forms were similar to the DLA ones, and like the DLA require quite a bit of preparation in the form of medical and psychological reports, evidence from social workers, schools, or any other professionals you have had contact with. Commissioning a report from a private educational psychologist might be worth the investment. We also had detailed reports from Bibic (The British Institute for Brain Injured Children – another wonderful organisation). All of this costs time and money but it can be a worth-while investment. The PIP process started with me applying to act on Billy’s behalf, which involved a visit from a sympathetic DWP (Department of Work and Pensions) worker. This was despite Billy insisting that he would not cooperate with the process if he couldn’t spend any money as he wished – which was why I applied on his behalf. The forms were completed over the phone. It was a struggle to persuade the DWP to send correspondence to me as Billy would ignore or bin it, but when he eventually had a summons to an interview I phoned up and explained that there was zero chance that he would attend, and asked for his case to be considered on the basis of the paper evidence alone. Contact a Family had warned me that we would probably be turned down and have to appeal as the forms are heavily weighted towards physical disabilities, but to my great relief he was awarded the PIP, although at a lower rate than the DLA. I had to open a separate bank account for the money – although in fact I was able to use one that I had previously opened for a personal assistant Jo used to have, which give us three hours a week respite, before the funding was withdrawn by the Local Authority.
Employment and Support Allowance – Although clearly aimed at people in or looking for work, rather than in school, this benefit is available to young people in full-time education from the age of 16. The forms, filled in over the phone, are not at all well-suited to this and the person on the other end had to be continually reminded that Billy was eligible even though he wasn’t looking for work. The list of disabilities did not include ‘attachment disorder’, clearly not something the person filling in the form had come across before, so we compromised with ‘migraines’. We have to get a ‘fit note’ from the GP every three months as well, which is also really aimed at adults in or looking for work. The main reason I persisted with ESA is that if a young person in school or higher education has both DLA or PIP and the ESA they might automatically qualify for a bursary. These combined benefits (PIP, ESA and a college bursary) don’t quite cover Billy’s additional support costs but they certainly help.
Carer’s Allowance – If you have to give up full-time work to care for a child, or adult for that matter, for 30 hours or more a week (from memory), and have minimal earnings, you may also be entitled to Carer’s Allowance. It’s not very generous but can make a difference.
Council tax discount for disabled people – This is one few people are aware of, and is really aimed at households that need to make adaptations for wheel-chairs, treatment rooms, etc. When we initially applied to the local council we were turned down, and appealed on the grounds that the council’s definition of disability includes behavioural disabilities (which are, after all, the result of brain-damage in utero or as a result of early neglect). To qualify a child must have the exclusive use of a room other than a bedroom, bathroom or kitchen, related to his or her disability. The benefit gives you a reduction of one band on the council tax rating. In the past a council employee would come round to check that the room was as described, but they no longer have the resources to do this. In Jo’s case we provide her with a ‘chill-out’ room, a kind of padded-cell with nothing breakable, but with cushions and soft-toys, places to hide, let-off steam, calm-down and feel safe.
Hope this helps! Please let us know what you have found useful.
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