Advice on Adaptations
When our son Josh was diagnosed just before his seventh birthday our whole world fell apart. After the initial shock, anger and of course the tears came the reality of life with a child who is disabled. It soon becomes very apparent that you are very much 'on your own'. People who hold positions of authority within local government as well as health and social security etc, can be at best unhelpful at worse rude and outright hostile. The following is my attempt to give parents the information and power to get things done, eventually if we keep doing this parents will not have to 'reinvent the wheel' every time someone new has to go through this.
REMEMBER YOU ARE FIGHTING FOR YOUR CHILD'S RIGHTS NOT FOR A HANDOUT AS SOME IN AUTHORITY THINK! YOUR SON HAS A RIGHT TO LIVE LIFE WITH DIGNITY..............The following information is based on my experiences it is not set in tablets of stone but an attempt to make life easier for those that follow.
1. Allow at least 3 years from start to finish. Some may be quicker some longer but on average three years is not an exaggerated time span
2. After diagnosis first thing is to have your son assessed by a children�s social worker and occupational therapist as being 'in need' this will be vital later if problems occur.
3. Apply to the local authority for a DISABLED FACILITIES GRANT this is a means tested grant to have your property adapted for your son. You will require the following: Ground floor bedroom and bathroom (some homes have a lift fitted and upstairs adapted, this was not possible in my home due to layout of rooms and stairs) Track hoist (mobile hoist no good due to weight increase) A specialist bath ,toilet and sink (at 2002 prices approx. £14,000).
4. After the means test the local authority will make you an offer depending on their calculations and based on your income, you may well be happy with this if so good, however many people are not!! to give you an example we were assessed as having to make a contribution of £54,000 this is the amount we would have to pay towards building work. For guidance this was based on our joint income of about £30,000. To say we could not afford such a large amount was an understatement, it was at this time panic really started to set in. We asked the council to reconsider but to no avail.
5. If you are unable to pay your contribution write to your local authority and remind them of the following: THAT A CHILD �IN NEED� (REMEMBER SECTION 2) ONCE HAVING BEEN ASSESSED THEY ARE REQUIRED TO MEET THOSE NEED�S, ASK TO BE REASSESSED UNDER...SECTION 17 "CHILDREN'S ACT 1989" STATES HE IS ENTITLED TO AN ASSESSMENT UNDER THE "CHRONICALLY SICK AND DISABLED PERSONS ACT 1970" Under the above legislation the authority is required to meet the child's needs. The means test under this legislation is less strict and authorities have to take into account more outgoings also other children in the family. They also have more discretion to amounts of grant.
6. If the local authority refuse or after doing it you are still not happy you may appeal to the Local Government Ombudsman (we did twice) they are very helpful.
7. Remember the following.......
(a) put everything in writing keep ALL letters
(b) log all phone calls time/date and most of all get a name (it is amazing how people deny speaking to you)
(c) fight your corner for your son, knowledge is power. Remember your son has rights and many local authorities are not aware of them.
(d) get people on your son�s side. Physio�s , O.T.�s, teachers and politicians,go to the press, but give the authority a chance to rectify mistakes, give them a reasonable deadline ...put the pressure on them for once!!
The above is based on our experiences and is for advice only. I can only tell you what worked for us, it is hard and they wear you down. Remember you are still trying to cope with the diagnosis .
The Outcome
After nearly 3 years of fighting and an emotional rollercoaster, we have just had the work finished in time for Christmas (Dec 03) and not before time. We were having to carry Josh upstairs to his bedroom (great for his self esteem) hopefully the new extension will give him the maximum independence any 10 year old craves. After 3 years fighting Josh has his new room. We in the end had to make a contribution of Zero!!!!!!!!!!! But it has taken a toll emotionally hopefully you will have more luck. I have not included all relevant information regarding how to deal with local authorities but I would be willing to share our experiences with anyone should they wish to contact me, good luck!!!!
Northern Ireland
In Jan 2004 the Northern Ireland ministry decided to abolish the means test for the DFG for adaptations following intense lobbying from parents of disabled young people. We need to campaign for the same in the rest of the UK. Please contact me for further details.
For more information, there are documents available as part of our document library .