From: Rachael [rachaelross@up-for-reading.info]
Sent: 04 February 2011 17:58
To: DWP Consultation DLAReform
Cc: Policy
Subject: Footprints Downsyndrome Support Grounp

Dear Fiona

I am writing to represent the views of the Footprints Down Syndrome Support Group, based at Down Syndrome Education International.  The support group consists of 68 members, who all have a child with Down syndrome.

As parents we struggle to access adequate provision for our children.  There is a two year waiting list for pysiotherapy in the area, speech therapy is restricted, and often unsatisfactory when it is available, and this is reflected across all the services.  

As parents of disabled children, we are concerned that the reforms will further deprive our children of their entitlement to adequate care and provision, the level of which is already unsatisfactory. 

Here are our responses to some of the questions outlined in the consultation.

Question 1 - There are still huge barriers preventing our children particpating fully in society and leading full and active lies.  These include inadequate provision of services and education.  While we all value the importance having the right to send our children to mainstream schools, teachers do not always have the experience needed to help our children reach their full potential and they do not access the relevant support agencies (for financial reasons) to do this.

The needs of our children are not always fully met by the statementing process, and even when support is highlighted, this is not always provided by the schools.

Speech problems are a huge issue for our children, preventing them interacting fully with their peers, teachers etc.  Speech therapy is viewed as inadequate or non-existent by nearly all our members.

The attitudes of professionals, and society as a whole, are still often negative and show an ignorance of the condition.  There is poor awareness about Down syndrome on the whole.  

Some of our friends have older children with DS who have not been supported after leaving school.  They have not been given the opportunity to work, and this again affects their ability to become valued members of society.  Many are heavily dependent on benfits, as they have no other available options.

Question 3 - There are many extra costs faced by our children including extra tranport costs due to medical or therapy appointments, laundry and washing, special dietry foods, use of nappies above usual age, mobility and support aids such as seating suports, safety equipment around the home, therapy sessions and reports when LEAs fail, learning and educational aids, speech aids, etc.  Meeting these costs is made all the more difficult when parents are unable to work due to their caring responsibilities, or can only work part-time.

Question 4 - Many parents feel that they have had problems accessing the DLA benefit, and many feel that they have been awarded the lowest levels of the award because the needs of their children do not match the criteria on the application forms.

Members thought that it would be unfair if being awarded a certain level in one award, influenced any other payments in a negative way.

Question 5 - Members could not believe that having Down syndrome did not already lead to an automatic entitlement to the benefit.  We very strongly feel, that the syndrome is widely recognised along with all its associated traits, and therefore should be included in the automatic entitlement list.

Question 8 - The person should be assessed on their disability and needs.  If they have mobility issues and use a stick to walk from one side of the room to another, they should not be penalized for this.  The group felt that if people were to lose benefits because of the aids they use, because their income is already low, it could be a disincentive to use the aid.  This might be particularly relevant when a carer is responsible for a disabled person/child's finances, and they may put their financial need before the need of the disabled person.

Question 9 - The cuurrent DLA forms are lengthy and very time specific, which makes them difficult to complete.  While the group felt it is good to celebrate the positive about our children, they also felt that unless the problems and areas of need are highlighted, then adequate assessment and subsequent provision can not be made. It is important for you to know what our children cannot do so that their needs are successfully met.

Question 10 - The group stated that their children are regularly monitored by various health and education officials including consultants, speech therapists, educational pychologists, statementing process etc.  This should provide the evidence needed to support their application.  It should be the authority's responsibility to collect this information.  The person with the disability should not be expected to collect the evidence, or pay for expensive reports from professionals.  This should be enough evidence, and no further costly assessments should be carried out.

Question 11 - Down syndrome is an identified syndrome, that is permanent.  Further face to face assessment is inappropriate should not be necessary, unless an appeal has been lodged.  All the evidence needed can be found in our children's current medical reports, and anything more would be a waste of tax payer's money.

Parents were concerned that any face to face assessment might cause stress for our children, and may not give an accurate picture of our children's disabilities.  A more accurate picture can be gauged from looking at already existing evidence that has been collected over a period of time, by professionls who know our children well.

Parents were also concerned that assessments might be carried out by professionals employed by the Government/Authority who were working to a tight budget, and whose main concern was keeping costs down.  Many of us have already experienced this through the statementing process.

Question 12 /13 -  (see above) Since Down syndrome is a syndrome that will not disappear with time, it was felt that reviews should be very infrequent.  Families felt that they already attended enough medical/health consulatations, and any more would place added stress on the family.

If there is an increased need for support, families should be aware that they can have their claim reassessed.  Health officials should also recommend this to families if they notice a change in need.

If families feel that the an incorrect assessment has occurred, they should be able to appeal to be reassessed.

Parents were worried about the failure to inform the authorities about changes resulting in a reduction or cut in benefits.  Parents or carers often lead very hectic lives, and are tired.  As well as caring for a disabled child, they may have other children, a house to run, may have a job, and may be responsible for elderly relatives.  This might lead to mistakes in paperwork, or forgetting to update the authorities.  Also, a parent may not realise that a small change is significant.  Taking away the child's benefit may result in the child receiving inadequate care.

Question 14 - Professionals such as portage workers, family doctors etc, should help make parents aware of their rights to claim the benefit.  Professionals should be up to date with their advice, and have the child's best interest at heart.  Several members said that they were given the wrong advice, and told to wait until the child was two or three before they should make a claim.

If help is needed to complete the form, it should state clearly on the application form/notes where this might be found.

Question 15 - Members felt that it shouldn't be a requirement to seek help to complete the application form.  The form should offer advice where to find help if required.  Severely disabled people and children will have a carer, who will help them complete forms.  Other disabled people may be able to do this for themselves.

If it is made compulsory that some groups must have help to complete their forms, because they are too physically or intellectually disabled to do it for themselves, then this group should qualify for automatic entitlement to the benefit.

Question 16 - Many of the members receive aids and adaptations from their health professional, but these have often been used before by other children, can be old fashioned or worn, and there is often a waiting list.  Many parents are forced to buy the items for themselves.  

If the required aid is not seen as a vital necessity, then the parents must provide it themselves if they are able.  If they are not able, then the child will go without.  

Most children with Down syndrome have moderate to severe speech and language problems. Speech aids are not provided by the NHS (many of our members do not have access to a speech therapist).  Nearly all our members buy their own aids.  This is very costly as the aids must be updated regularly to maintain progress.

Question 18 - 20 The disability benefit should provide speedier acess to services such as speech therapy, physiotherapy, occupational therapy etc.  In our area there are waiting lists for therapies, two years for physiotherapy for example, and speech therapy is inadequate, or non-existent in some cases.  It should also be a short cut for qualifying for the disabled parking badge, to save on duplicate paperwork.

Question 21 - The members felt that the impact of the proposals could have far reaching consequences  on children with down syndrome if their needs are not provided for adequately.  Parents felt stongly that they loved their children, and could accept their disabilities, but constant red tape, paperwork and fighting for adequate care and provision put a huge and unnecessary strain on family life.