Every Family Matters: Disability, pregnancy and parenthood.
This is a report of a meeting of the Forum on Maternity and the Newborn, jointly with the Intellectual Disability Forum of the Royal Society of Medicine and supported by Disability, Pregnancy and Parenthood International, held on Monday 19th June 2008.

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Morning session
, chaired by Dr. Jane Verity, Department of Health
Disabled parents: the issues and challenges.

Jane Verity, Department of Health.

Maternity matters. Choice, access and continuity of care in a safe service, is a government policy which focuses on what women want, their needs, risks and choices. It offers every woman high quality, safe and accessible services which are flexible and individual. By the end of 2009, women will be offered four choices: they will be able to choose how they access maternity services, going directly to a midwife if they wish; it will be possible to make choices around the type of antenatal care, and the place of birth, at home, in a midwifery facility or in hospital and about where to access postnatal care. Postnatal care can be provided in a children's centre, which offers familiarisation with other support services and the opportunity to learn parenting skills.

To deliver this a woman's needs, risks and choices will be addressed at the earliest possible stage of pregnancy, and an indicator has been introduced to measure how many women see a midwife by the 12th week of their pregnancy for a full assessment. A typical protocol for midwives based on this national policy requires the assessment of a woman's needs with the provision of any communication aids such as interpreters including sign language interpreters, and the adaptation of the birth environment to take account of her specific vulnerabilities.

The Department is piloting The Family Nurse Programme, organised to provide intensive support for vulnerable women throughout their pregnancies and until their children are aged two. It is targeted at families who might expect the poorest outcomes, starting with 1000 pregnant women aged 19 in families on 10 sites in England. 8% of these women have learning disabilities.

Further pilot schemes are to be rolled out. This is a licensed programme from America, where the results for 20 years have been very good. The family nurses are recruited from health visitors and midwives, and they make home visits; they focus on pregnancy outcomes, child development, and economic self-sufficiency. Learning and parent-child attachment are promoted, and the approach and materials are adapted for those with learning disability. Parents disabled physically or mentally are helped, and the programme links to the Department's Child Health Promotion Programme, providing support from early pregnancy to five years of age.

Disability and Parenthood: the context.
Jackie Topp (JT), disabled parent, advocate and researcher, currently employed by Advocacy Northamptonshire as an advocacy development worker for people with severe learning disabilities. Her presentation was read in her absence by Rosalind Mansfield.

"Disability and parenthood are words which seem to come together uncomfortably in our society." (Campion 1995)

I first became a disabled mother 20 years ago. At that time I had a diagnosis of MS but did not consider myself disabled. It was not until my twins were born in 1992 and my symptoms deteriorated that I began to realise that becoming a disabled mother was something substantially different to becoming a non-disabled mother. I was prompted to pursue my interest of this area through academic study and undertook a research degree at The Open University. This paper outlines the context in which disabled parenting resides and the conclusions I made from my research findings.

Throughout the 20th century disability was deeply associated with sickness, poverty and dependence on others. Eugenic practice compounded the social worthlessness of poor and disabled people, preventing them from becoming parents. Parenting was a social expectation limited to the middle classes where money equalled better health and higher status. Eugenics was outlawed in 1954; however social understandings of disability in this country did not change until the 1970s and the rights to secure help with becoming and being a parent were a long time coming. During the 1970s a discriminatory society was identified and held responsible for excluding disabled people from taking an equal part in life ( The Union of the Physically Impaired Against Segregation - UPIAS, 1976 ). Finkelstein (1981) writes of barriers in society that prevent disabled people from being unable to contribute to the paternalistic capitalist society and that continue the socially worthless identity attributed to them. The new way of thinking about disability was that it was not the fault of the person that prevented their active inclusion in society; it was due to ingrained discriminatory social attitudes and systems. Disabled people let it be known that they wanted rights, and adequate and appropriate support to live and work to be equal citizens in a non-disabled society. An outcome of this was the Disability Discrimination Act (DDA) of 1995. Although the principle of the Act aims to work towards a less discriminatory society, sadly it uses a definition of disability that essentially positions disabled people as abnormal. Such an ascribed identity continues the misunderstanding that disabled people are unfit to parent.

A plethora of research around disabled parenting occurred during 1990s. Goodman (1994), showed 60% of disabled women being advised against childbearing. Begum (1996a&b) found that many disabled women were coerced into abortion or sterilisation. It was generally assumed that recipients of care could not be providers of care. Disabled women were not 'good enough' to meet the social understanding of what is a mother.

Although disability often tended to be seen as the determinant of inability to care (McConnell & Llewellyn 1998) different impairments were viewed more or less favourably. Learning disabled parents have been particularly subjected to discrimination. However parental competence is an attributed status owing much to the decisions of professionals and courts (Booth & Booth 1994). Nevertheless 'The Jigsaw of Services' Social Services Inspectorate Report (Goodinge 2000) suggests a continuing trend, with 60% of disabled parents involved in child protection issues identified as learning disabled. The marked prejudice against parents with mental illness also contrasts with more tolerant attitudes towards those wtih physical or sensory impairment (Swain & Cameron 2003 and Wates 2002).

Despite the experiences evidenced in my research the equalisation of disabled people's rights to have a family became addressed in the United Nations Standard, Rule 9 (1993). This states that countries should promote the full inclusion of persons with disabilities in family life and their rights to personal integrity, ensuring that laws do not discriminate against persons with disabilities with respect to sexual relationships, marriage and parenthood. Furthermore, the Disability Rights Taskforce (1999) made recommendations encouraging health care professionals not to judge disability as illness, not to allow their views of disability to prejudice treatment, to serve disabled people without discrimination, to be proactive in their support for the pursuit of their rights, and to challenge discriminatory attitudes in health and social care. My research looked to see if and how this might be happening in the 21st century.

My research findings.
Using the narratives from women living in one county and applying a feminist approach to my analysis I found that disabled women now perceive becoming a parent as a natural life event. The desire to become a mother appears largely unaffected by being disabled; the women do not see themselves as worthless and dependent but as good enough parents. Fundamentally disabled women want to be perceived as having equal rights to non-disabled women and expect adequate support through and after pregnancy. However I found that the negative connotations of disability remained ingrained for many. Few identified themselves as ?disabled', instead preferring to identify as ill, or suggesting they to want to pass as normal by hiding the effects of their conditions. This suggests that being disabled is still viewed as being devalued.

Clearly historical understandings have been difficult to eradicate, despite the legislation. However such legislation has improved the experiences of disabled women in some areas. While some still meet with ignorance or resistance, many are now being encouraged to take up their right to parent. In my research the themes of support and risk are reflected throughout the range of experiences during the pregnancy and the neonatal period. Whether the experiences were positive or negative appeared to depend on whether the woman was treated in a way that reflected her concerns and how she identified.

Since the advent of the DDA disabled women appear to experience less discrimination within the maternity environment than has been previously reported. Surgeries and clinics are mostly accessible, and access within maternity wards is slowly improving. However the attitudes of some maternity care professionals sometimes remain discriminatory, reflecting the work of many researchers including Morris (1989), Begum (1995a&b), and Wates (2003). There is a lack of adequate emotional, physical and material support and insufficient referral to specialist organisations. Few disabled people know they have a right to obtain support with their parenting needs, and living with impairment restricts their experiences of services. Moreover many healthcare professionals were found to be unable to signpost women to the specific support requested, and evidence suggests that information and equipment for disabled mothers-to-be is rarely available within mainstream services.

An important finding of this research is that many professionals have an apparent lack of understanding of the way disabled women identify themselves, how they feel that their impairments may impact on the babies' health and how they understand anticipated risks. Perceptions may differ between professionals and their disabled clients as to what is important, what is pregnancy risk, and what dangers threaten them as mothers. A lack of early planning often results in women having to manage extra stress later in pregnancy as they become challenged by the impairments, their effects, or lack of services. They are often unable to obtain appropriate or adequate information when risk is identified. Three women in my study were advised against pregnancy and one recommended to have her pregnancy terminated; all believed that their doctors thought they would not cope as disabled mothers. There is evidence of professional ignorance of the capabilities of disabled parents, and of the support existing to enable good, if unconventional parenting.

In conclusion my research suggests that much work is still required to improve the professional understanding of and attitudes towards 'disability' and 'parenting', which often remain archaic. Some of the recommendations I have made in relation to my findings are that all healthcare professionals must:

· Understand that disabled people have the right to be parents, and actively facilitate their capacity to be the parent they want to be by supporting their impairment needs and concerns specifically and appropriately.
· Learn about and understand the different ways in which disabled people identify.
· Learn how to communicate effectively with disabled people with different types of impairment.
· Ask about, listen to and attend to the concerns of disabled people becoming parents.
· Know what national and local support networks exist for disabled parents and ensure that disabled people know about them.

Only when disabled women are treated holistically and without prejudice will the historical context in which they remain even today be finally left behind.

References

(1995). Disability Discrimination Act. DDA: Chapter 50.

Begum, N., Ed. (1996a). 'Doctor, Doctor...' Encounters with Strangers: Feminism and Disability. London, The Women's Press Ltd.

Begum, N. (1996b). General Practitioners' Role in Shaping Disabled Women's Lives. Exploring the Divide. C. M. Barnes, G. Leeds, The Disability Press. chapter 9: pp 157-72.

Booth, T. and W. Booth (1994). Parenting Under Pressure: Mothers and fathers with learning difficulties. Buckingham, Open University Press.

DRTF (1999). Minutes of the 14th meeting (Disability Discrimination Act) held on 13 October 1999. DisabiIity Rights Task Force. DfEE, Caxton House, London SW1.
www.disability.gov.uk (Accessed 7/3/2009).

Goodinge, S. (2000). A Jigsaw of services: Inspection of services to support disabled adults in their parenting role. London, Dept. of Health.

Goodman, M. (1994). Mothers' Pride and Others' Prejudice: A survey of disabled mothers' experience of maternity. London, Maternity Alliance.

McConnell, D. and G. Llewellyn (1998). "Parental Disability and the Threat of Child Removal." Family Matters 51: 33-36.

Morris, J., Ed. (1969). Able Lives: women's experience of paralysis. London, The Women's Press.

Swain, P. and N. Cameron (2003). "'Good Enough Parenting': Parental disability and child protection." Disability & Society 18(2): 165-177.

United Nations (1993). Standard Rules. http://www.independentliving.org/standardrules/StandardRules1.html (Accessed 7/3/2009)

Wates, M. (2002). Supporting disabled adults in their parenting role. York Publishing Services for Joseph Rowntree Foundation.

Empowerment: practical examples of midwife care for parents with additional needs. Patricia Fairlamb (PF), Midwife (Special Needs), Milton Keynes Maternity Unit, Milton Keynes General NHS Trust

Empowerment enables clients to make informed choices and decisions about their care; it is a vital part of the midwife's role.

Pregnant women may feel that they have to a degree lost control over their lives; all the more so if they are disabled, and this may have been aggravated by their experiences with education, health and social services, which can leave them feeling disempowered. They may then lack the mental energy to seek the care they need, don't attend antenatal clinics and put themselves and their babies at risk. The previous speaker would have us treat the disabled in the same way as others, but this has been known to result in their needs being ignored.

All maternity staff, from the domestics to the consultants, must be made aware of the special needs of the disabled; a focus on the pregnancy alone will not provide holistic care (RCM 1996 position paper 11), and cannot confer empowerment. It is important to engage in forward planning for the disabled as early as possible in pregnancy, so that we can be ready at any time to provide the appropriate care, for example mobilising necessary equipment such as hoists. An early review of medication should avoid adverse effects on mother or baby; some women will have mistakenly discontinued taking their medicines. Good communication must underpin all of this.

Reports identifying women at potential risk in the antenatal period, and developing management plans for them, are having a beneficial effect (CEMACH report 2005-6). Birth plans made in early pregnancy should include some notes from other departments, especially mental health, informing the maternity team of any problems and medication; information from the general practitioner and other hospitals will also be helpful. The care plan which I have designed includes trigger points reminding the midwife of important referrals to be made, such as to occupational therapy, leading to essential adaptations in the home. In a strange environment we all become vulnerable, and any disability may add to this, so an early introduction to the ward and clinic area can only assist. Incorporating as it must the woman's wishes, the plan acts as her advocate. The care plan is a useful audit tool which ensures ongoing improvement in care.

The purpose of a care plan is to ensure equal access to the maternity services ( Disability discrimination act 1995 , now the Equality Act 2010). The plan is preferably set up in the mother's home, prepared jointly by mother and midwife, and with the family's agreement. The nature of the disability is noted, with the impact that pregnancy is likely to have on it, and any requirement for more medical or social input. Necessary adjustments to antenatal classes, clinic appointments and intrapartum care are noted, as are needs for interpreter, signer for the deaf, and information and educational material in print or on tape, CD or DVD if available. It is important to tailor the acquisition of informed consent to the mother's abilities. A side room may be needed, even permission for guide dog access. The plan is to be used in conjunction with guidelines, general and disability specific.

Members of staff are well advised to introduce themselves every time they meet the sensory disabled client , and the staff must be careful to avoid stigmatising the disabled, a not uncommon anxiety among them. On the contrary, we and they may take comfort from the fact that a care plan ensures a woman-centred service; she is empowered by it, and given a useful degree of control over the events of her pregnancy and birth.

References.

Booth, T. A & Booth W. (1994) Parenting under Pressure: Mothers and Fathers with Learning Difficulties. Open University Press, Philadelphia.

D.H.S.S. Disabilities Discrimination Act 1996

D.H.S.S Changing Childbirth. Expert Maternity Group 1993 (1995)

Carty E. Connie T Holbrook A. et.al. Guidelines for Serving Disabled Women (1993) Midwifery Today 27: pp29-37

Williams L. Learning Disability and Parenting (2006) MIDIRS midwifery digest 16:3 315-317

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