Gene People HomepageGene People

Call free on

0800 987 8987

Help in the community

GDUK is proud to announce our new partnership with the Disability Law Service, a charity which assists disabled people and their families with legal advice.

Below DLS lawyers answer frequently asked questions about community care from people affected by genetic disorders and parents and carers of children with genetic disorders.

If you wish to contact the charity call 020 7791 9800, email: advice@dls.org.uk or go to their website: www.dls.org.uk

I have asked my local council for an assessment of need to my disabled son aged four. They have not replied to my phone calls. What should I do next?

You can put in a formal complaint to the local council’s complaints department regarding the delay in getting back to you about the assessment for your son.

Your complaint should outline: the date you requested the assessment, name of anyone you spoke to, and the length of time you have waited since your initial call.

You should highlight that within one working day of a referral being received, a local authority social worker should make a decision about the type of response that is required and acknowledge receipt to the referrer. (Working together to safeguard children guidance, paragraph 58).

You can also ask your son’s GP or school teacher to make a referral on his behalf, as well as outlining any difficulties your son is having without the provision of social care services.

Please note that the maximum timeframe for an assessment to conclude should be no longer than 45 working days from the point of referral. (Working together to safeguard children guidance, paragraph 60).

My local social services wrote an assessment about my daughter’s needs but we disagreed with a lot of what they have written. Lots of it is factually incorrect. They have said they can’t change it. Do I need to get a lawyer involved?

At this initial stage you would not need to get a Lawyer involved. Resolving the matter via the social services internal process is recommended before you start legal proceedings.

If you do not agree with what is written in a care assessment, you do have the right to challenge this, and request that amendments are made. Firstly, do not sign the assessment as this would confirm that you are happy with the contents of the assessment.

You will need to write to the children services department and copy in the allocated social worker. Your letter should outline the date your daughter was assessed, name of the social worker, and the duration of the assessment.

You will need to go on to explain what sections in the assessment are wrong, and what it should be amended to. It is suggested that you request the changes be made, and a new copy be sent to you within 5-7 working days.

The “Working together to safeguard children” guidance (paragraph 37) confirms that during an assessment, it is important that information is gathered and recorded systematically, information is checked and discussed with the child and their parents/carers where appropriate, differences in views about information are recorded, and the impact of what is happening to the child is clearly identified.

Another option is to request that the assessment be carried out again. You also have the right to request a copy of the questions that will be asked so that you, and your daughter can prepare yourselves.

If social services refuse to make any amendments, or re-assess your daughter then request written reasons in writing, and seek legal representation.

Legal aid is available in Community Care. Please see the factsheet on the legal aid page for the eligibility criteria for legal aid. back to top…

My six-year-old son needs care through the night. My son’s father and I are divorced and he stays at his dad’s every other weekend. Am I still entitled to respite care? I am struggling to keep my part-time job because I am so tired.

Yes, you would still be entitled to respite care as you are still recognised as your son’s parent carer, and have parental responsibility for him.

The legal entitlement is covered under the Children Act 1989, Schedule 2, paragraph 6(1)(c). This requires local authorities to provide services designed to assist family carers of disabled children ‘to continue to provide care, or to do so more effectively, by giving them breaks from caring’.

In performing the above duty, the local authority must: –

  1. Have regard to the needs of those carers who would be unable to continue to provide care unless breaks from caring were given to them; and
  2. Have regard to the needs of those carers who would be able to provide care for their disabled child more effectively if breaks from caring were given to them to allow them to –
  3. Undertake education, training or any regular leisure activity
  4. Meet the needs of other children in the family more effectively
  5. Carry out day to day tasks which they must perform in order to run their household. (Regulation 3, The Breaks for Carers of Disabled Children Regulations 2011)

When quoting the above regulations, you can explain the difficulties you are having in managing work with your caring role, and the way your own health is affected in not having respite care. State what company you work for, your job role, years of service, and the hours you work per week.

A local authority must provide, so far as is reasonable practicable, a range of services which is sufficient to assist carers to continue to provide care, or to do so more effectively. These services must include a range of: –

  1. Day-time care in the homes of disabled children or elsewhere;
  2. Overnight care in the homes of disabled children or elsewhere;
  3. Educational or leisure activities for disabled children outside their homes; and
  4. Services available to assist carers in the evenings, at weekends and during the school holidays. (Regulation 4, The Breaks for Carers of Disabled Children Regulations 2011)

An interview to discuss your needs, as well as your son’s needs would be beneficial to determine which service would be most appropriate.

You will need to obtain a copy of the local authority’s short breaks statement which should be published on their website, and set out details of the range of services available under Regulation 4, any criteria by which eligibility for those services will be assessed, and how the range of services is designed to meet the needs of carers in their area. (Regulation 5, The Breaks for Carers of Disabled Children Regulations 2011). back to top…

We have found a residential home for my 16-year-old daughter who has complex needs and behavioural problems. Our local council is insisting on asking her opinion on the placement. Although she is verbal her cognitive ability is extremely limited and I am worried this will upset her. What entitlement does she have?

Under the Mental Capacity Act 2005, decisions can be made on behalf of individuals aged 16 and over who lack the capacity to make such decisions for themselves, provided that this is in the person’s best interests.

As your daughter is 16 years old, health and social care professionals and other practitioners providing care and support to them will work on the basis that they are able to make decisions for themselves, unless this is shown not to be the case (Mental Capacity Act 2005, s1(2). If there are concerns that your daughter lacks capacity to make decisions, an assessment of her capacity should be undertaken in accordance with the Mental Capacity Act 2005.

Even if your daughter lacks the competence, or lacks the capacity to make a particular decision, she should be involved in decisions being made about her. The Mental Health Act Code 2015 states that ‘children and young people should always be kept as fully informed as possible’ and that they should receive clear and detailed information concerning their care and treatment, in an age appropriate format, and that their views, wishes and feelings should always be sought and their views taken seriously.

Her entitlements involve having her parents involved in the meeting when the local council ask her opinion on the placement. You can also request that an advocate be present if you feel that she would not be able to understand any of the questions asked.

Note that your family, and daughter’s preferences should not be sacrificed merely because they are in conflict with what a Council considers to be ‘best’ and where possible the Council should yield to the personal preferences of the family and disabled child.

You may also want to consider applying to be your daughter’s deputy for personal welfare if she lacks mental capacity (see below). back to top…

I have been waiting for walking frames for my eight-year-old twins for 18 months as they have out-grown their old ones. Our local physiotherapy department supplied their last one and their school says the replacements must come from them. Can we put any legal pressure on the physio department to speed up the process?

Find your Patient Advice and Liaison Service (PALS) in the hospital to speak about the complaints process, and getting some guidance and support. See if the PALS member can help you in resolving the matter informally before making a complaint.

If this does not work, you can put in a complaint through the NHS complaints procedure. You can make your complaint verbally, in writing, or by email. If you make your complaint verbally, a record of your complaint will be made and you will be provided with a written copy.

Due to the 18-month delay in waiting for the walking frames, and the length of time you have waited already, be sure to request that your complaint be dealt with as a matter of priority, and that you request a response within two weeks of the date of the letter.

You can state that Section 3 of the National Service Act (NHS) 2006 requires the NHS to provide services, and facilities to address people’s healthcare needs, which includes walking frames.

You can explain the difficulties, and how your eight-year-old twins have suffered as a result of outgrowing their old walking frames. Outline any injuries that have occurred because of the delay, and using the insufficient walking frames. If injuries have been sustained provide medical evidence where possible.

Additionally, you may want to consider making a complaint to the School, as there has been a failure of the School, and NHS working together to provide the walking frames. The School could have written to the physio department regarding the delay, and confirming that it is the NHS’s duty to provide the replacements.

If you are unable to resolve the issue through the NHS complaints procedure, you can take it further to the Parliamentary and Health Service Ombudsman to investigate.  The Ombudsman is independent of the NHS. back to top…

My son has a genetic disorder which means he needs help dressing and showering. I have asked my local authority for direct payments so I can pay someone to help me with this while I look after my son’s younger brother and sister, they have refused. Can I appeal that decision?

You are entitled to appeal the decision. You will first need to request written reasons for the local authority’s decision to not provide you with direct payments.

To appeal the decision, you will have to write to the local authority’s complaints department. Note that complaints must be made within 12 months of the matter which is the subject of the complaint.

You can then challenge the decision by stating that the right to insist on a direct payment applies regardless of whether the support is provided under the Chronically Sick and Disabled Persons Act 1970, or the Children Act 1989.

Local Authorities are under a duty to make a direct payment where: –

  1. The person appears to the responsible authority to be capable of managing a direct payment by themselves or with such assistance as may be available to them;
  2. The person consents to the making of a direct payment;
  3. The responsible authority is satisfied that the person’s need for the relevant service can be met by securing the provision of it by means of a direct payment; and
  4. The responsible authority is satisfied that the welfare of the child in respect of whom the service is needed will be safeguarded and promoted by securing the provision of it by means of a direct payment. (Regulation 7(1), The Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009).

You will need to demonstrate that you, and your son meet the above criteria, and where possible provide medical evidence. For example, does your son require 2-1 care because of his genetic disorder?

You will need to explain what your son’s disability is, and how this affects him on a daily basis. Explain what assistance he requires in his dressing, and washing needs, and how long this takes you in the mornings. Also provide information about your other two children, their age, and any health conditions that they have. You should also explain your family situation – for example, say if you are a single parent, and explain what support from family members is available.

If the matter is not resolved through the local authority’s complaints procedure, then you can ask the Local Government Ombudsman to investigate.

Your son would also be entitled to a S17 assessment of his care needs under the Children Act 1989. You could also be entitled to a disability facility grant to provide aids and adaptations in the home to help manage his washing needs more effectively, such as installing a wet room, a shower chair, and/or a hoist. An occupational therapist will carry out an assessment which will determine what adaptations can be made in the home, with the space available. back to top…

I have heard the phrases ‘power of attorney’ and ‘deputyship’ said in relation to my child’s rights when she becomes an adult. What do they mean and what is the difference between the two?

A Lasting Power of Attorney (LPA) is a legal document that enables someone (the donor) to appoint one or more persons (attorneys) to help make decisions, or to make decisions on their behalf. The donor must be 18 years old and over, and have the mental capacity (the ability to make their own decisions) when they make their LPA. 

There are two types of lasting power of attorney, health and welfare, and property and financial affairs. A health and welfare LPA gives the attorney power to make decisions about the donor’s daily routine, medical care, moving into a care home, and life sustaining treatment. Under a property and financial LPA, the attorney has the power to make decisions about managing a bank or building society account, paying bills, collecting benefits or selling a home.

The duties of attorneys include: acting in the best interests of the donor, considering the donor’s needs and wishes, and keeping accurate accounts of their dealings and transactions.  The powers that the Attorney has are making decisions where the donor should live, or healthcare matters.

A LPA needs to be registered with the Office of Public Guardian, which then takes 8-10 weeks to complete. There is a fee of £82 to register each LPA.

Deputyship is where someone is appointed by the Court of Protection to handle the day to day running of a person who lacks mental capacity, which means they cannot make a decision for themselves at the time it needs to be made.

There are two types of deputy, a property and financial affairs deputy, who essentially makes decisions about paying bills, and living accommodation.  A personal welfare deputy makes decisions about medical treatment, and how someone is looked after.

A deputy’s main duties are: to safeguard the individual’s assets, act in their best interests, prepare accounts annually, or as required, and ensure that their funds are being used to provide him/her the best quality of life. Their powers are to sign forms on the individual’s behalf, and to consult regularly to find out their views on how their money is spent, (if they have appropriate mental capacity).

An application form, and £400 fee has to be sent to the Court of Protection. A £320 supervision fee has to be paid every year. A security bond is also payable if you are appointed as a property and financial affairs deputy. An annual report will also have to be sent to the Office of Public Guardian each year that explaining the decisions made.

You can apply for an exemption or reduction of the fees for both a lasting power of attorney, and deputyship if the person has an income of less than £12,000. You might also be able to apply for an exemption if the person is on a means tested benefit such as, income based JSA, income based ESA, income support, housing benefit, and council tax benefit. back to top…

I am worried my non-verbal child is coming home from school with marks on her back. How can I check on safeguarding at her school?

You can request a copy of the School’s safeguarding policy. The policy should outline arrangements that reflect the importance of safeguarding, and promoting the welfare of children. It should also provide information on timescales, how to report concerns, and the investigation process.

You should also request to speak with the designated safeguarding lead in the School whose responsibility is to take lead responsibility for safeguarding and child protection. You can express your concerns, and arrange a meeting to discuss the matter further.

The governing bodies, management committees or proprietors of the following Schools have duties in relation to safeguarding and promoting the welfare of pupils (Working together to safeguard children guidance, paragraph 10): –

  1. Maintained schools (maintained by local authorities, including nursery schools), further education colleges, and sixth form colleges, and pupil referral units;
  2. Independent schools; (private schools run by private individuals or organisations under contractual agreements) and;
  3. Non-maintained schools (not maintained by local authorities). 

Where there is a safeguarding concern, governing bodies, proprietors and school or college leaders should ensure that the child’s wishes and feelings are taken into account when determining what action to take and what services to provide. The School should provide your child with an Expert that can use communication aids to allow your child to express their views, and give feedback. (Paragraph 79, Keeping Children Safe in Education 2015).

Schools and colleges should have regard to statutory guidance, Keeping Children Safe in Education (2015), which provides further guidance as to how they should fulfil their duties in respect of safeguarding and promoting the welfare of children in their care.

A copy of the guidance is here –

https://icebreakerideas.com/keeping-children-safe-in-education/ back to top…

I believe my son could benefit from a power wheelchair but wheelchair services are refusing to provide one. They say his motor skills couldn’t cope with a power chair. Can I challenge their decision?

Yes, you can challenge the decision through the NHS complaints procedure. First, request written reasons for their refusal, as well as a copy of their eligibility criteria for the supply of powered wheelchairs.

Your complaint should state that assessments, and their provision of publicly funded wheelchairs are the responsibility of local NHS wheelchair services in England, (s3, NHS Act 2006).

Each Health Authority should assess local needs and determine local eligibility criteria for the supply of powered indoor/outdoor wheelchairs. This should be within the national framework (Health Service Guidelines, (96)34) that says the disabled person: –

  1. Has difficulty in propelling a manual chair outdoors;
  2. Is able to benefit from the chair through easier and increased mobility, leading to improved quality of life;
  3. Is able to handle the chair safely after training.

You will need to explain how your son meets the above criteria, and where possible provide medical evidence, i.e. has he injured himself by using a manual chair outdoors?

You can argue that the wheelchair service is breaching your son’s human rights by not providing a powered wheelchair. For example, an unsuitable wheelchair can cause considerable hardship and pain, including postural pain which can constitute degrading treatment (Article 3, European Convention on Human Rights (ECHR)). Also, without the use of a powered wheelchair, your son may be unable, or be restricted from interacting with other people, and the environment, (his right to do so arises under Article 8, ECHR).

You can request that your son’s GP provides a referral, or supporting letter for your son to have an assessment, as they should also support children in seeking such equipment, and provide advice on the process.

A voucher scheme also exists that gives the option of purchasing a powered wheelchair from an independent supplier (Health Service Guidelines, (96) 53). Request a copy of the eligibility criteria from your local NHS Trust. There are two options, an independent option, and a partnership option. The independent option means you will be the owner of the wheelchair, and responsible for the maintenance and repairs. The partnership options means the NHS which own the wheelchair, and be responsible for maintenance and repairs.

In some cases, powered wheelchairs can also be purchased through the Motability Scheme by those in receipt of the high rate mobility component of disability living allowance (DLA), or the enhanced rate of the mobility component of personal independence payment (PIP).

Your other options involve seeking charitable support to address your son’s mobility needs from Charities such as, Whizz-Kidz, and Cerebra. back to top…

Further advice on these matters

For further advice on these matters please contact:

Disability Law Service:

Telephone: 020 7791 9800

Email: advice@dls.org.uk

Website: www.dls.org.uk

Or write to us at: The Foundry, 17 Oval Way, London, SE11 5RR

© Disability Law Service 2018.  Registered Charity Number 280805, Company Registration Number 1408520back to top…

your donation will help improve the lives of individuals & families

Donate now
Call free on 0800 987 8987 Address: Gene People
Nightingale House
46-48 East Street
Epsom
Surrey
KT17 1HQ