Job Description – Mother for Disabled Child

Something I wrote back in 2005, the Carers allowance rate has changed (not a lot!) but nothing much else seems to have


This is a permanent post – HOURS: 168 Hours a week, 52 weeks per year. Time off: by negotiation with Statutory/Voluntary or Private agencies (NOT GUARANTEED) – No Experience necessary – No training will be provided – SALARY= £0 – Although Carers Allowance is available = £53.90 per week (subject to filling in long and complicated forms)

JOB PURPOSE: To provide a full parenting service to a disabled child or children. This includes promoting their human rights, ensuring that all of their needs are fully met and that they take an active part in family life and the wider community

ACCOUNTABLE TO: Partner, disabled child, other children and extended family


  • The ability to love unconditionally (under extreme provocation at times)
  • Boundless energy and patience
  • The ability to work under immense pressure (sometimes/Frequently with little or no sleep)
  • Must be prepared to work anti-social hours, with no sick leave or time off in lieu.
  •  Physical strength (this role requires a lot of manual labour, well developed shoulder and back muscles are therefore essential)
  • The ability to balance the needs of this child with the needs of other children, and family life. (This could include combining this role with full / part time employment and/or study).
  •  A “Thick skin” (this role receives a lot of criticism, you will need to prepared to be stared at and judged by others around you at all times)
  •  The ability to skilfully negotiate, advocate and mediate on behalf of your child. (A good telephone manner would be useful)
  •  Excellent organisational skills (you will have to juggle a variety of appointments without the support of a secretary / personal assistant)
  • The ability to multitask.
  • Good networking skills combined with the ability to work independently and use your own initiative.
  •  Must be prepared to become skilled in non-verbal communication techniques and interpretation of body language.
  •  Must not be fazed by body fluids.
  •  Must have an empathetic nature, (able to work with children / adults who may be distressed)
  •  A good sense of humour is essential.

DESIRABLE: These skills will be learnt on the job and will be of distinct advantage to you and your child:

  • An in depth understanding of your child’s condition, syndrome, impairment, this may include: Epilepsy (Administration of drugs, including rectal Valium) and/or Genetics – and /or Autistic Spectrum Disorders  / “Challenging behaviour”- and /or Physiotherapy, Occupational therapy, speech therapy  – and /or Sign language (Makaton, BSL) or other communication methods.
  •  Learn to use a variety of equipment, which may include:  Hoists.  Feeding tubes, Various wheelchairs and adaptations.  AFO’s (leg braces)  You should also be prepared to have countless adaptations to your home. Which may include tracking for hoists, hoists, ramps, stair gates, locks on doors, which may have to be number locked, (a good knowledge of mathematics not necessary, but a good memory vital!)
  • An in depth knowledge of SEN law, procedures and codes of practice.
  • A knowledge of: The Children Act (1989), The NHS & Community Care Act (1990), The Disability Discrimination Act (1995), The Carers and Disabled Children’s Act (2000), The Carers Recognition (and Services) Act (1995), The Carers (equal opportunities) Act (2004) – And other relevant legislation.
  • A good understanding of entitlement under these acts would be an advantage.  (see additional notes on legal issues, e.g. Complaints procedures, Ombudsman, Judicial reviews)
  • Experience of working with other agencies, Statutory, Voluntary and Private including Health, Social Services and Education and attending meetings (with all, of the above, and an appreciation that you will have to repeat yourself, several times to each agency) a distinct advantage.
  •  A broad – base knowledge of local politics i.e. the holders of the purse strings. (Speaking at council meetings, writing letters to local newspapers, optional – but occasionally necessary)

It is possible that if/when your child does leave home you may be overseeing a Direct Payment and managing an independent living scheme – skills required for this include a knowledge of…

  •  Finance – Direct payments /ILF/ DLA/ Clients contributions / housing benefit and other benefits/ Tenancy agreements / Pensions
  •  Accountancy – Time-sheets /Wages / BACS / Tax / Employers contributions
  • Management- Personnel / Recruitment induction/ Training / supervisions / appraisals.
  •  Health and safety – Risk assessments
  •  Law – employers and public liability / employment laws

This is extremely demanding and stressful position. You are required to support your child right across the life cycle. (It should be stated that retirement is not an option.) It requires a variety of skills, which you will have to be prepared to learn on the job.

It is recommended that you make contact with others in the same role, these colleagues will be a vital source of support by providing an unconditional ear, understanding, a shoulder to cry on and endless cups of tea (or occasionally something stronger) when / if required.
Given the right amount of support this job can give untold job satisfaction and be extremely rewarding. But, much of this will depend on your ability to negotiate for this support. For this you will need to be determined, assertive, proactive, accept you are in a minority, recognise diversity as a good thing, accept that you and your child will be discriminated against throughout your lives and that from time to time you will fail to achieve your goals. Success in this role will see you grow in confidence, ability and knowledge and become a powerful advocate for your child.

Failure to meet any of the above criteria will not affect your being considered for this position.

PLEASE NOTE: The Parental Leave Directive does not apply to this post and the right to apply for flexible working arrangements is waived.


About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
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