Defining a ‘disabled parent’ can be a difficult task indeed. Many impairments change in nature, their impact can vary depending on an individual’s circumstances and some impairments come and go. A person with a chronic illness may be unable to carry out certain actions yet not be legally classified as ‘disabled’, while another recognised as ‘disabled’ by law may not identify themselves with this terminology. Notwithstanding, if you are the child of a parent with special needs, it may be helpful to know that you are not alone; in the average school, one in nine parents is likely to be disabled and this number is increasing as time goes by.
What are the Most Common Impairments in the UK?
Any advice for children with disabled parents is bound to be general in nature, since there are a numerous number of disabilities, which vary greatly in nature and degree. The most common disabilities in the UK include:
- Visual Impairment: According to the RNIB Sight Loss UK 2013 report, there are 1.87 million people in the UK with sight loss significant enough to impact their daily lives.
- Hearing Impairment: There are almost 9 million people with hearing impairments.
- Learning disabilities: There are around 1 million adults and 410,000 children aged up to 19 with a learning disability.
Know What You’re Up Against:
Having a disabled parent can be challenging, particularly if you are living with a sole parent, since you may find that much of your life is a delicate balance between caring for your parent and living an independent life; one that is rich with academic, social and sporting/artistic goals. It is important to be aware of a few significant statistics, so that you can target specific problem areas.
These are some significant UK statistics regarding children of disabled people:
- A large proportion of young carers of the disabled have to face educational problems; many miss school and/or fail to attain educational qualifications.
- Virtually all young carers’ parents receive welfare benefits and do not work. Poverty and feelings of social exclusion can be common.
- Many families receive little to no social care services. There is no evidence of any specific resources which support disabled parents in their parenting role.
- Where parents have serious and lasting mental health problems, some young people can experience a crisis and leave home early, sometimes entering into care.
- Young carers are more mature and independent, yet these benefits can be outweighed by lesser educational, social and employment opportunities.
How to Make the Most of Your and Your Parent’s Lives:
Despite the statistics, it is not uncommon to hear of inspiring stories of parents overcoming these challenges. Take the case of this family, in which both parents were blind yet managed to hold down successful careers and raise three kids. The following are our top 15 tips:
- Make sure your family is getting all the help it is legally entitled to. A health and social care needs assessment will identify the support your parent needs – they may be assigned a personal assistant; if so, make sure the latter does not make your parent feel like they are being deprived of their rights and duties; parenting tasks should not be overtaken by someone else unless it in a child’s welfare.
- Make sure your parent is receiving Employment and Support Allowance if they are entitled to it.
- Lean on dedicated organisations for support: The organisation, Disability, Pregnancy and Parenthood International (DPPi) offers information and advice for disabled parents. It has an excellent website which offers information on useful professionals and resources, as well as a host of practical guides you and your parents may find useful. Many publications are specifically catered to the needs of the disabled. These include ‘How to’ guides on carrying a child on a wheelchair, bathing small children or choosing a cot. There is also useful information aimed at those with specific disabilities, including guides for visually impaired parents, deaf families and parents with MS.
- Encourage your parents to become involved at school; parental participation at school is promoted in England, Wales, Northern Ireland and Scotland. The Disability Discrimination Act (DDA) 1995 states that educational institutions have a duty to ensure that disabled people are not placed at a substantial disadvantage when compared to non-disabled people. It has been officially recognised that kids with involved parents do better academically at school; is your school doing all it can to help your parents become involved? These are some ways your school can encourage involvement:
- Providing your parents with information in an accessible format – this includes raised formats, Braille labelling, etc. Homework, meanwhile, should be explained orally to parents with sight impairment.
- Providing dedicated staff to support families (e.g. parent liaison officers, extended school services…)
- Encouraging your parent to volunteer at the school by providing the necessary adjustments.
- Encouraging your parents to get involved in Parent Councils and Governing Boards.
- Working with other agencies to support your family; some schools liaise with health and social work and psychological services etc., since all these institutions are involved in your welfare.
- Schools need to be consistent; they should be communicative and supportive throughout your school years, rather than provide assistance in spurts.
- An open-door policy: Parents should feel like the school is flexible to listening to their need at all times; formal meetings can be stressful, particularly for those with mental challenges.
- Encourage your parents to create a solid social network. The Disabled Parents Network has a useful forum for disabled parents, which is a rich source of queries and tips on services and resources.
- Keep things in perspective: Everyone has challenges; disability is just one of these.
- Rely on family: A supportive family network will take a load off you; you should not ideally be providing all the care your parents need, since you need time for school, social pursuits and sport/hobbies as well.
- Encourage your parents’ independence. If they have active interests and hobbies, they are likely to enjoy their private space and to respect yours as well. It is vital for you to set your limits and establish precise times for study, socialising, sport, etc. It is important to be a caring child but also to enjoy life and reach your maximum potential in all respects.