dna iconFAQ: Support & Guidance

FAQ

FAQ: Support & Guidance

Welcome to the Frequently Asked Questions section for finding Support and Guidance.for Nutritional Intervention for Children with Down's Syndrome (NICDS)

Please click here for our Frequently Asked Questions section directed at answering General Quesitons.

Please click here for out Frequently Asked Questions section for Nutritional Intervention for Children with Down's Syndrome (NICDS)

The Down's Syndrome Research Foundation -- is a Medical Research Charity.

Our objective is medical research to find treatment therapies and medications to ELIMINATE THE NEED  for many of the services which are the only resource to families at this time.

What looks like a blessing - can sap the will to fight for medical research.

Medical research that can cure the mental handicap is a reality and its showing great promise in animal studies.

Now we need the really expensive human research projects to develop a medicine to improve memory and mental function.  No amount of support services is a substitute for good health and a normal life span.  Our children have a much shorter lifespan  a very high risk of dementia in the 40's and 100% will show evidence of Alzheimer's when they die.  Do nothing and this is the future for our children.  But it need not be this way!

We need your support to carry out the medical research -- 

My child needs specialist help with speech and language, where can I find a therapist in my area?

The Royal College of Speech and Language Therapists (RCSLT) is the professional association for speech and language therapists, it also runs an information service and gives advice to the public.   tel: 020 7378 1200 email: postmaster@rcslt.org web: www.rcslt.org

The Association of Speech and Language Therapists in Independent Practice has a complete listing of all registered and qualified therapists and will be able to give you the name(s) of therapists working in your area. tel:08702413357 web: http://www.helpwithtalking.com/Default.aspx

My child who has Down’s syndrome has been diagnosed with a heart defect, where can I get specialist support and information?

The Down’s Heart Group can offer help and support to families who have a child with DS and heart problems. P.O.Box 4260 Dunstable LU6 2ZT tel: 0300 102 1644 fax: 0300 102 1645 email: info@dhg.org.uk web: www.dhg.org.uk

Where can I find specialist help in teaching my child to sign?

The Signalong Group is a charity which provides support and help in sign-supported communication. tel: 0870 774 3752 email: mkennard@signalong.org.uk web: www.signalong.org.uk

Makaton Vocabulary Development Project offers materials and training in the use of the Makaton sign language. tel: 01276 61390 email: mvdp@makaton.org web: www.makaton.org

Symbol (UK) Ltd is an independent speech and language therapy service providing specialist support and help for those with learning disabilities. tel: 01795 844440 email: symbolukltd@btconnect.com

How can I find out about specialist childcare facilities in my area for my child who has Down syndrome?

The Children’s Information Service can give you information about all the child care facilities in your area. tel: 08000 96 02 96 web: www.childcarelink.gov.uk

The Daycare Trust is a national charity which promotes affordable childcare for all children. tel: 020 7840 3350 email: info@daycaretrust.org.uk web: www.daycaretrust.org.uk

National Portage Association is a home-visiting educational service for pre-school children and their families. tel: 01935 471 641 email: parents@portage.org.uk web: www.portage.org.uk

Where can I get specialist learning disability help for my child?

Mencap is the UK’s largest charity for all people with learning disabilities. tel: 0808 808 1111 email: help@mencap.org.uk web: www.mencap.org.uk

British Institute of Learning Disabilities offers excellent help for all people with learning disabilities. web: www.bild.org.uk

I have a child who has Down’s syndrome, where can I get general information, on help and support?

The Down’s Syndrome Association is the largest DS charity in the country and provides information and support on all aspects of living with Down’s syndrome. They will also be able to put you in touch with a local parent support group. tel: 0845 230 0372 email: info@downs-syndrome.org.uk web: www.downs-syndrome.org.uk

Where can I find out about early interventions schemes?

KIDS is a national charity dedicated to helping children and adults with disabilities to develop and reach their full potential. tel: 020 7359 3635 email: enquiries@kids-online.org.uk web: www.kids-online.org.uk

The Down Syndrome Educational Trust is focussed on the education and development of individuals with Down’s syndrome. tel: 023 9285 5330 email: enquiries@downsed.org web: www.downsed.org


I think that my child who has Down’s syndrome needs to go to a specialist school, where can I get independent advice?

The Independent Panel for Special Education provides free advice and support on Local Education Authorities and outlines their duty to assess and provide for children with special educational needs. tel: 01394 380 518 email: ipsea.info@intamail.com web: www.ipsea.org.uk

Where can I find out about inclusive education for my Down’s syndrome child?

Network 81 is a national network of parents who are seeking to gain properly resourced inclusive education in mainstream schools for special needs children. tel: 0870 770 3306 email: network81@tesco.net web: www.network81.co.uk

Parents for Inclusion is a network of parents of disabled children with special needs who are seeking to ensure that their children’s needs are properly catered for in mainstream schools. tel: 0800 652 3145 email: info@parentsforinclusion.org web: www.parentsforinclusion.org

What financial support am I entitled to for my child who has Down’s Syndrome?

You will be entitled to a Carer’s Allowance and Disability Living Allowance and under the Child Tax Credit an extra allowance for having a child with a disability. Also when your child reaches 16 years they will be entitled to Incapacity Benefit (now called Employment and Support Allowance {ESA})

Department of Work and Pensions, government site gives details of all these allowances available and how to claim them: www.dwp.gov.uk

Department for work and pensions ESA fact sheets: www.dwp.gov.uk/esa/resources.asp

Where can I find out about the financial support which is available for me, I have a Down’s syndrome child?

Department of Work and Pensions: www.dwp.gov.uk

The Family Fund is funded by the government and provides means tested grants and advice on the financial support which available to those with disabled children under 16. tel: 0845 130 4542 email: infor@familyfund.org.uk web: www.familyfund.org.uk

The Family Welfare Association provides financial support and help to disabled children and their families. tel: 020 7254 6251 email: grants.enquiry@fwa.org.uk web: www.fwa.org.uk

British Institute of Learning Disabilities gives a lot of help and advice on their web site. web: www.bild.org.uk

Mencap gives financial advice on the help which is available. tel: 0808 808 1111 email: help@mencap.org.uk web: www.mencap.org.uk

The Down’s Association provides information on the financial support which is available and has a Benefits Support Advisor. tel: 0845 230 0372 email: info@downs-syndrome.org.uk web: www.downs-syndrome.org.uk

Where can I find out information on employment and the right to work for people with disabilities?

Mencap should be your first point of contact they have contacts across the UK of companies which employ people with learning difficulties and the types of jobs available. They are also aware of the use of Human Rights principles to ensure that people with learning disabilities have right of employment. They have a series of training courses and leaflets for helping people with learning difficulties to develop skills which will help them gain employment. tel: 0808 808 1111 email: help@mencap.org.uk web: www.mencap.org.uk

British Institute of Learning Disabilities has a lot of useful information and support on their web site. web: www.bild.org.uk

Jobs Centre Plus has a very useful section on employment for the disabled which explains how they can refer you to a disability employment advisor who will give you information on the ‘New Deal for Disabled People’: refer you to a specialist programme: refer you for training: explains the ‘Disability Discrimination Act’: can put you in contact with local disability organisations. web: www.jobscentreplus.gov.uk

Also look at the following web sites:

Where can I find out about independent living for people with learning disabilities?

About Learning Disabilities UK has some very useful tips on independent living and the rights of the individual.

The site summarises the governments Independent Living Strategy which states that by 2013 all people with disabilities will be given more control and choice over their living arrangements. web: www.aboutlearningdisabilities.co.uk

Mencap provides individually tailored support to meet the specific needs of people with learning disabilities to enable them to live more independently. tel: 0808 808 1111 email: help@mencap.org.uk web: www.mencap.org.uk

British Institute of Learning Disabilities has some very useful information on their web site. web: www.bild.org.uk

I have heard the term ‘advocacy’ what does this mean?

Advocacy means that someone speaks up for another person when they need support. For a person with disabilities it means that they make sure that their views and wishes are heard and that they are not being ignored. In short advocacy means allowing a person with disabilities to take control of their own lives and to have a say in how they want to live.

An advocate:

  • Helps a person to make things happen in a constructive way, whether its in education, independent living, housing, gaining employment.
  • Helps a person to take control of how they want to live.
  • Ensures that a person with disabilities has equal rights.
  • Ensures a person with disabilities has the same chances as everybody else and that their views are listened to.
  • Enables a person with disabilities to have a voice that is heard and that they receive a reply to their questions.

For further information go to:

British Institute of Learning Disabilities which has downloadable leaflets and also runs training courses for people who would like to become an advocate. web: www.bild.org.uk

Mencap has information on advocacy on their website. tel: 0808 808 1111 email: help@mencap.org.uk web: www.mencap.org.uk