Saturday, May 27, 2017
391FansLike
482FollowersFollow

Disability rights activist Joanne O'Riordan led a massive demonstration on the Rights of People with Disabilities to Dail Eireann, Dublin on March 30th 2017…

Joann O'Riordan
  • Joanne O’Riordan led a protest in Dublin on March 30th 2017.

 

Disability rights activist Joanne O’Riordan, with representatives of more than 100 disability organisations nationwide, led a public demonstration in Dublin on Thursday, March 30th 2017, seeking to highlight the 10-year anniversary of Ireland’s failure to ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

​The UNCRPD is the human rights convention concerning persons with disabilities. It is a list of rights guaranteed to persons with disabilities to improve their access to society, education and employment. Ireland remains the only country in the EU that has failed to ratify the UNCRPD after the Netherlands and Finland ratified it last year.

The demonstration took place outside Dáil Éireann, Kildare Street, Dublin 2 at 11.00am on the day, with the support of Inclusion Ireland, and was attended by many members of Dáil and Seanad Éireann, including Róisín Shortall TD and Senator John Dolan, both of whom actively campaign for the rights of people with disabilities.

protest2Twitter was alive with activity on the day – you can see @nolimbsnolimits, #makeequalitythepolicy and #RatifyCRPD for detail of this highly successful event.

TheJournal.ie’s detailed report, with pictures and video, can be found here: http://www.thejournal.ie/un-convention-disabilities-joanne-oriordan-3315265-Mar2017/

Further information can be found at Joanne’s own Disability Rights Protest webpage, where you will also find more detail explaining the UNCRPD.

You will find detail on the protest itself here, on the Easy-to-Read poster.

protest3Inclusion Ireland released a press statement, condemning the 10-year delay in ratification and calling on Government to resolve it immediately. Inclusion Ireland Press Release

Contact Details

More information can be found on Joanne O’Riordan’s Facebook page https://www.facebook.com/Joanne-O-Riordan-page-No-Limbs-No-Limits-338388866219802/?fref=ts or via her Twitter feed @nolimbsnolimits.

Author Bio

Joanne O’ Riordan is a Disability Rights Activist and winner of the Outstanding Young Person of the World award 2015. She is a regular contributor to TV, Radio and various other media outlets in support of her campaigns for the rights of people with disabilities.

Paul Kilmartin points a thought-provoking finger at government policy in the face of one of the most concerning news stories of 2017 so far.

  • An 11 year old died in Tullamore.
  • All her short life she suffered a lot.
  • Her Mother was a doctor and gave her some injections to help with the pain. She died soon after.
  • Her Mother felt let down by Ireland’s services.
  • The Health Sector needs more money to provide better services.

On Saturday the 15th of September, 2012, an event took place in a large midlands town which would as it concluded, turn an eye on the role and pressures of the carer in assisting the severely disabled. Despite the legal and ethical ramifications, which as of now have found the primary carer innocent of all charges, the smaller points of detail galvanised the public’s opinion of the woman who was accused of the manslaughter of her 11-year-old daughter.

Emily Barut, 11, daughter to Bernadette Scully and Harun Barut, and living in Tullamore, had led the most difficult of times in her profoundly disabled young life. Suffering from severe epilepsy, microcephaly and cerebral palsy, she had epitomised what it would mean to suffer. Emily, as her mother testified to in court, would suffer badly from colic, crying incessantly. In the last few weeks of her life, she had undergone surgery to replace the tube through which medicine was being delivered into her stomach. According to her mother, she had been having more frequent and violent seizures in the days leading up to her death.

 

This had led to Bernadette Scully, a practising G.P., administering the drug, Chloral Hydrate, when her daughter became upset at 2am and 6am that day. She also said that Emily then had a massive fit after 11am and she administered some more. Emily died, as the State Pathologist, Dr. Marie Cassidy said, from a massive seizure which occurred six to eight hours before her death.

Throughout the trial of Dr. Bernadette Scully, a separate picture began to emerge, away from the accusations. It was one of hopelessness that Bernadette Scully felt in the face of the suffering of her only daughter. She told of how ‘people were not queuing up’ to help her disabled daughter. And in fact, this is a similar tale from the many families who care for children or adults with disabilities of any kind. Bernadette Scully felt let down by a complete lack of services.

 

Advocates for services for the disabled are constantly fighting for access to financial aid and greater inclusion in society for those who need it the most. The glare of the media’s spotlight shamefully moved away from the case of those with a disability in the weeks after the acquittal of Dr. Scully. Nothing to see here folks, move along.

We don’t have the resources, that is the Grimm style fairy-tale tale that is often heard while referring to supports for families of those with disabilities. It is deemed more important for the governments of our time to build a new Luas line or shorten a commute by spending seven million euros on a bypass around Athlone. Let’s think about that. Emily Barut and hundreds more like her deserve that we think about that.

Author Bio

Paul KilmartinPaul Kilmartin is a keen writer of fiction, with a background in nursing studies. Hailing from Tullamore in County Offaly but now living and working in Dublin. Paul works in various health and mental health sectors across the city for the Nursing agency Nurse on Call, and uses this broad overview of the services to address social issues in his writing.

How to avoid loneliness in older people with an Intellectual Disability, by Andrew Wormald

  • Avoiding loneliness is important for healthy ageing
  • Nearly twice as many older people with an Intellectual Disability (ID) experience consistent loneliness, when compared to the general population
  • Having a Person Centred Plan (PCP) improves a person’s chance of avoiding loneliness
  • Changes in the frequency of visits with family is a factor in recovery from loneliness
  • Moving within the service organisation was related to becoming lonely

What are the circumstances in a person’s life that best help them avoid or overcome loneliness? For some people as they age loneliness is an ever-present risk. Mounting losses to social resources and deterioration in health increase the risk of experiencing loneliness. However, not all people experience loneliness, and some people are able to recover from the experience of loneliness. This article highlights the findings from the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing (IDS-TILDA). Those findings can help our understanding of what can be done to reduce the chances of a person with an ID becoming lonely, or if they are lonely what can be done to overcome that loneliness.

 

Loneliness is an aversive experience that causes suffering for the individual. It is thought to arise because our inherited evolutionary warning system is alerting people that their social networks are inadequate, leaving a person exposed to danger and at risk of a shorter life (Cacioppo & Patrick, 2008). When loneliness becomes chronic, it has been associated with raised systolic blood pressure (Hawkley et al., 2010; Ong et al., 2012), increased cardiovascular disease (Lynch, 2000), suicidal ideation (Merrick et al., 2006) and increased mortality (Cacioppo & Cacioppo, 2014).

 

The experience of loneliness can be chronic, transient or situational (Peplau, 1988). Victor et al. (2008) described four states of loneliness that people can experience: Consistent Loneliness, where participants reported loneliness over both waves of data collection; Regenerative Loneliness, where people report experiencing loneliness in wave 1 but not in wave 2; Degenerative Loneliness, where participants report no experience of loneliness in wave 1 and in wave 2 report feelings of loneliness; and Never Being Lonely.

 

Latest results from the IDS-TILDA study offer hope to older individuals with an ID, staff and service providers about how loneliness can be avoided or overcome. The IDS-TILDA is Europe’s leading longitudinal research project investigating the ageing process of older people with an intellectual disability. The project is following the lives of 753 participants throughout the Republic of Ireland. A total of 297 participants completed the loneliness scale; all were able to self-report their experience of loneliness over 2 waves of data collection 3 years apart.

 

 

It was found (Figure 1) that more than 26% of participants reported experiencing Consistent Loneliness over the two waves of data collection, 19% were categorised as Regenerative, 12% were Degenerative and 42% of participants never reported experiencing feelings of loneliness. The amount of Consistent Loneliness is nearly double the amount reported from the wider population (Figure2). The good news is that, having more people in the recovered from loneliness than became lonely is unusual and goes against the trend of findings in the wider population (Jylhä, 2004; Wenger & Burholt, 2004; Victor et al., 2008).

 

In a regression analysis the three factors found to predict never being lonely were having less functional limitations, having a person centered plan (PCP) and not wanting to do more activities.

While it may be difficult to overcome a person’s functional limitations staff and services should be aware that increased functional limitations increase the risk of loneliness. Participants with average functional ability, compared to those categorized as good functional ability, were half as likely to be in the never lonely category. Those with poor functional limitations were one-third as likely to be in the never lonely group.

 

Having a PCP is fundamental to many modern services and 82% of participants in this sample reported having a PCP. People with a PCP were more than twice as likely to be categorized as never reporting loneliness, than those that did not have a PCP. This finding highlights the efficacy of a good plan and further justifies their ongoing development.

 

The finding that not wanting to do more activities leads to an increased chance of never being lonely also makes sense. This reflects one the central pillars of the Cognitive Discrepancy Approach to loneliness which is that loneliness is experienced when achieved social resources do not match desired social resources (Perlman & Peplau, 1998).

 

Participants who had experienced changes in family visit rate were over four times more likely to recover from experiencing feelings of loneliness. This reflects the importance of family in the lives of people with an ID, and it is an issue that is commonly dealt with in a PCP planning process.

Degenerative loneliness was predicted by moving within the service organisation. Those who did move within their service structure were nearly three times more likely to become lonely than those that did not. This problem has been raised previously as a potential unintended consequence of current policy (Wormald, 2014). Moving within the service can represent a disruption to the established way of life often found to precipitate loneliness (Weiss, 1973; Victor et al., 2008). Situational life changes such as this have been found to lead to temporary experiences of loneliness from which people recover (Peplau, 1988), whether this applies to this population will be established once wave 3 data is collected and analysed.

 

The most significant predictors of consistent loneliness were having had a fall in the month before wave 1 and experiencing difficulties doing activities. The effects of having a fall are quite striking in that a person who fell in the month before wave one was three times more likely to be lonely than a participant who did not fall. Loneliness is often brought on by a single precipitating event, having a fall may be such an event. Once people fall they may feel they can no longer attain their own desired social life and may develop a sense of hopelessness. If a fall does mark a decline in a person’s life when they can no longer control their destiny, then staff and services need to be aware of this and give the person help in this transition helping them to adjust their expectations.

To help older individuals with an ID have a positive and healthy ageing experience it is essential they avoid loneliness. Findings from IDS-TILDA suggest that an individualized PCP and stability in their lives will help people with ID avoid loneliness. Staff and service providers should also support individuals in making changes to social networks to better meet social needs. While functional limitations and physical decline are not under direct control of anyone all of us can still be mindful that both reduce the chances of avoiding loneliness and ensure people are given the help they need to adapt their expectations to changing realities.

References

BROER, T., NIEBOER, A. P., STRATING, M. M. H., MICHON, H. W. C. & BAL, R. A. (2010). Constructing the social: an evaluation study of the outcomes and processes of a ‘social participation’ improvement project. — Journal of Psychiatric and Mental Health Nursing 18, 323-332.References

CACIOPPO, J. T. & CACIOPPO, S. (2014). Social Relationships and Health: The Toxic Effects of Perceived Social Isolation. — Social and Personality Psychology Compass 8, 58-72.

CACIOPPO, J. T. & PATRICK, W. (2008). Loneliness: Human nature and the need for social connection. — WW Norton & Company.

HAWKLEY, L. C., THISTED, R. A., MASI, C. M. & CACIOPPO, J. T. (2010). Loneliness predicts increased blood pressure: 5-year cross-lagged analyses in middle-aged and older adults. — Psychology and Aging 25, 132-141.

JYLHÄ, M. (2004). Old Age and Loneliness: Cross-sectional and Longitudinal Analyses in the Tampere Longitudinal Study on Aging. — Can. J. Aging 23, 157-168.

LAWLOR, B., GOLDEN, J., WALSH, C., CONRAD, R., HOLFELD, E. & TOBIN, M. (2014). Only the Lonely: a randomized controlled trial of volunteer visiting programme for older people experiencing loneliness. — In. Trinity College Dublin, Dublin.

LYNCH, J., J. (2000). A cry unheard: new insights into the medical consequences of loneliness. — Bancroft Press, Baltimore.

MERRICK, J., MERRICK, E., LUNSKY, Y. & KANDEL, I. (2006). A review of suicidality in persons with intellectual disability. — The Israel journal of psychiatry and related sciences 43, 258.

ONG, A. D., ROTHSTEIN, J. D. & UCHINO, B. N. (2012). Loneliness accentuates age differences in cardiovascular responses to social evaluative threat. — Psychology and Aging 27, 190-198.

PEPLAU, A. (1988). 3rd National Conference on Psychiatric Nursing, Montreal Quebec, Canada.

PERLMAN, D. & PEPLAU, L. A. (1998). Loneliness. — Encyclopedia of mental health 2, 571-581.

VICTOR, C., SCAMBLER, S. & BOND, J. (2008). The Social World Of Older People: Understanding Loneliness And Social Isolation In Later Life: Understanding Loneliness and Social Isolation in Later Life. — McGraw-Hill Education (UK).

WEISS, R. (1973). Loneliness The experience of Emotional and Social Isolation. — MIT Press, London.

WENGER, G. C. & BURHOLT, V. (2004). Changes in Levels of Social Isolation and Loneliness among Older People in a Rural Area: A Twenty–Year Longitudinal Study. — Can. J. Aging 23, 115-127.

WORMALD, A. (2014). UNDERSTANDING LONELINESS IN OLDER PEOPLE WITH AN INTELLECTUAL DISABILITY. — In: Frontline, Ireland, 96 p. 16-17.

Author Bio

Andrew Wormald is a part-time PhD student at Trinity College Dublin School of Nursing and Midwifery working as a member of the IDS-TILDA team. His subject is An Investigation of Loneliness in Older People with an Intellectual Disability. He is also an Instructor with the Brothers of Charity Limerick Services where he has worked for 10 years. Andrew graduated from the University of Limerick in 2010 with a First Class Honours Degree in Humanities and Graduated from The Open University in 2012 with an MSc in Psychological Research Methods. Prior to this Andrew worked for The Cheshire Foundation as an Acquired Brain Injury Support Worker and whilst in the UK worked in industry in a senior management role.

Lorraine Keating and Eilish Burke sought to help people with an intellectual disability to take better care of their own health, using a number of innovative methods…

  • Taking care of your health is important
  • Sometimes going to the doctor or doing health tests can be hard and frightening
  • When things are explained well it is easier to do them
  • People with intellectual disability are the best people to help get this done.

The importance of health and well-being is paramount to having a good quality of life. However, to stay healthy and happy into old age, and to experience good life quality you have to be an active participant in your own health. Policy shifts emphasise this philosophy and, for example, Healthy Ireland’s vision is underpinned with the belief that health is everyone’s responsibility.

 

Challenges and implications

Making that commitment to health is the first step on our health journey. However for people with intellectual disability, engaging with and having medical tests and examinations can pose challenges. Frequently there is a lack of available and appropriate health information – communication perception and interpretation difficulties are common, with literacy and lack of education widespread. Many healthcare professionals have little or no experience communicating with people with intellectual disability and sometimes there is a lack of knowledge of the health needs of people with intellectual disability. Physicality can pose challenges for people to actually perform the required test or often the tests/machinery used can be fear-provoking. Along with this, people with intellectual disability are frequently omitted from health research, often based on the assumption that it would be too demanding for them to take part, or too difficult to recruit.

 

If people with intellectual disability do not engage in regular health assessment for health promotion, or take part in research on their health, the gulf of disparity will continue. There will be a lack of empirical evidence to underpin policy and health inequalities, complex morbidity and earlier mortality will be a feature for people with intellectual disability into the future.

 

What we did to overcome the challenges 

As part of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing, and to provide robust empirical evidence of health, a suite of health assessments were included in the second wave of data collection. These assessments were specifically chosen to be transportable, provide a comprehensive overview of health and be comparable to the general population study, TILDA. The assessment suite was called ‘A Health Fair’ to remove the connotation of being tested and, it was decided that the Health Fair would go to the people themselves at a place and time that would best suit, where possible.

 

An easy to read information booklet about the Health Fair was developed. The authors, working together, gathered pictures that would represent the process, wrote short plain-language explanatories and both authors reviewed the booklet for accessibility. They then created easy-to-read explanations, in a step by step manner, for each of the health assessments involved. The developed material was then reviewed by a wider group of advocates, the study Primary Investigators and the scientific advisory group of the IDS-TILDA study.  The Health Fair was then further pilot tested and, from the feedback, any other amendments to the process were applied.

 

The results

Over 85% of all the people who were asked took part in the Health Fair, (n=604/708). People found it easy to understand and enjoyable. People said they would do it again and that it was explained clearly to them – the following quotes demonstrate these points: ‘I really thought that was absolutely great, it was very interesting really, I really liked It’; another noted ‘Ah, I’d stay here all day that was lovely and easy’. Some said they were apprehensive but when the explanations were given clearly this helped them understand what was going to happen and they were happy with things, ‘it was good, it was excellent and I wouldn’t mind doing it all again’.

 

Learning from our lessons

Keeping in mind ‘nothing about me without me’, this result of having easy-to-read information included demonstrates that, with the right inclusive approach, the correct accessible tools and being prepared to reasonably adjust inadequate built environments, impairing attitudes and other barriers to engaging people with intellectual disability in health assessment and research can be overcome. The design developed and used in this study is one that can lend itself to the healthcare field. Healthcare professionals who ensure personhood is core to their delivery of care will support people with intellectual disability to engage, become more confident consumers of health and ultimately promote best health and happiness as we all grow older in Ireland.

Author Bio

Lorraine KeatingLorraine Keating is an advocate for people with intellectual disability. She has supported the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing for a number of years, reviewing questionnaires, accessible material, building accessible tools and assessing fieldworkers training. She has given talks on her life experience to students in a number of health professions from nursing to psychiatry and sports sciences. She  enjoys crafts and is a keen knitter. She is very interested in the rights of people with intellectual disability and has carried out a lot of work in this area to ensure people with intellectual disability are properly included in research.

 

Eilish BurkeEilish Burke is a nurse and is the Ussher Assistant Professor in Ageing and Intellectual Disability at Trinity College Dublin. She has worked in the area of intellectual disability for over 25 years. She was previously project manager of IDS-TILDA promoting the health and wellbeing of adults with intellectual disability. As part of her PhD work in IDS-TILDA she conducted the full objective health assessment element in the second wave of data collection. Her area of research interests is bone health, health indicators and health promotion, accessibility and inclusion.

As Mary-Ann O’Donovan tells us, the role of policy and personal choice in moving to a new residence.

  • People with intellectual disability are moving to new homes/places to live.
  • Some people are moving to new homes in the community
  • Most people move to a similar type of home
  • People are not always asked if they want to move
  • People do not always get to choose who they will live with.

National housing policy for people with disabilities promotes the move from large residential settings to community-based living (with four people the recommended maximum number sharing the same residence). This is in line with international practice and the UN Convention on the Rights of Persons with a Disability, which states that an individual has the right to live independently as well as having the right to choose where and with whom to live. This is a welcome advancement of the self-determination, rights and autonomy of people with intellectual disability.

Who moved to a new residence?

Tracking where people with ID lived between wave 1 IDS-TILDA data collection (2010) and wave 2 data collection (2013), identified 120 movers. Of these 120 movers, just under 30 % moved to a less restrictive setting (e.g. a community home or independent living). The majority of moves made were lateral moves, which involved an individual moving to a setting similar to the one they were resident in previously. Also types of move were not all in line with the policy of de-institutionalisation. Some older people with ID were found to move to more restrictive settings (e.g. from community to institutional settings).

The breakdown of these movers by gender, age and level of ID are shown in Table 1.

 

Table 1: gender, age and level of ID 

 

Lateral Community Restrictive
Female 63.9% 37.5% 50.0%
Age (mean years) 59. 9 58.0 57.1
Mild ID 16.2% 9.7% 18.8%
Moderate ID 57.4% 45.2% 68.8%
Severe/profound ID 26.5% 45.2% 12.5%

 

Choice and involvement in decision to move?

Personal choice accounted for 10% of the moves made. The most prevalent reason for moving for the lateral movers was to accommodate the service (34.8%); whereas for more restrictive movers,  it was due to a change in health status (53.3%) and as result of service policy for more community-based moves (61.3%).

 

Though personal choice was not a dominant reason for moving for most of the participants, national policy and human rights conventions attest to the importance of choice of where and with whom to live, and that the individual with ID is involved in the decision-making process around moving to a new residence. The IDS-TILDA data illustrates that the rate of involvement of the individual in the decision to move was relatively low, with 7 out of 10 people not involved in this decision; and 4 out of 10 people reporting that they did not want to move. However, there was high reported happiness post-move. The decision to move involved multiple stakeholders for the majority of movers.

 

Clash of policy and choice?

From the data to date it would seem that moves that are taking place are not consistent with current policy directives, and that personal choice does not appear to be considered in most cases. This is a complex issue and needs broader debate. Though de-institutionalisation is a positive policy initiative, for people with ID who have only ever known this type of setting and have strong connections to the place and people within that place built over many years, the prospect of moving somewhere new could be quite daunting. This is a challenging situation for policy makers, service delivery, people with ID and their families. Further dialogue is needed to disentangle the policy recommendations, which are widely welcomed, and the individual’s preference for change (or not) in later years of life. How transition is planned and managed and the extent of involvement of the individual with ID and their chosen support, be it family, friends, advocates, is likely to impact greatly on successful implementation of the policy and enhanced quality of life and well-being outcomes for the individual with ID.

It is important to acknowledge the importance and enormity of such transitions, to track how they are happening, and their implications for the health, participation and well-being of the older ID population.  The Intellectual Disability Supplement to TILDA is currently tracking this movement by people with ID and will track longitudinally the impact on health and well-being. Although the movement of people with ID to community-based living is positive, it has the potential to impact negatively on people with ID if the individual is excluded from the decision-making and planning process, if the move is undertaken hastily and without due time and consideration, and if the required and appropriate supports are not in place to maintain the individual with ID in the new residence in the community.

More research is needed on both the processes and consequences of moves for people with ID as they age as well as greater insight into the extent of involvement in these processes. In addition, policy does not seem to acknowledge the diversity of moves that are happening in practice; there needs to be greater linkage between housing and health policies, to ensure the appropriate health and social care supports are in place so that the person with ID can age in the place of their choosing.

Author Bio

Mary-Ann O’DonovanMary-Ann O’Donovan is currently project manager of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and based in Trinity College Dublin. Mary-Ann completed her PhD in Health Services Research in the Royal College of Surgeons Ireland in 2015, focusing on the health and housing needs of older people with an intellectual disability. Prior to this she was employed as research officer in the Disability Databases Unit of the Health Research Board. In this role she was responsible for the management of the National Physical and Sensory Disability Database (NPSDD). Mary-Ann has also worked as research officer in the National Disability Authority and the Rehab Group.

Lessons from IDS TILDA by Kev Mac Giolla Phádraig.

  • Life is trickier for people with intellectual disabilities if they lose all their teeth. For example, they have more difficulty eating and more chronic constipation.
  • Therefore, everyone should keep their teeth for life. This means that everyone should brush their teeth effectively every day.
  • This article offers tips to keep teeth healthy.

Together, tooth decay and gum disease lead to tooth loss and oral disability.

 

In Ireland, about a third of older adults with ID have no teeth; a rate twice as common as in the general population. What is worse is that when older persons with ID lose all their teeth, they are very unlikely to have this treated with dentures: In fact, twelve times less likely than the general population (1, 2).  IDS-TILDA research has also shown that such oral disability, seen rather uniquely among older adults with ID, has significant nutritional implications. When people are left toothless and without rehabilitation with dentures they are more likely to report difficulty chewing, using modified diets, needing mealtime supports and even experiencing chronic constipation.

These nutritional implications have potential to hugely affect safety, health and quality of life, while increasing dependence on nutritional supports. For these reasons, amongst others, it is vital to maintain a functioning set of teeth for life.

 

For the first time, people with ID can expect to live into old age but a longer life is not the same as successful ageing. For successful ageing it is important to maximise health and minimise dependency. This means that we must all work together to maintain the oral health and function of all people with ID over the increasing lifespan. This represents a challenge because, unfortunately, people with ID have traditionally had poorer oral health than the general population. For example, previous research has shown higher levels of gum disease in Irish adults with ID and poorer outcomes from tooth decay (3).

While using Fluoride toothpaste and limiting sugary intake are important to reduce decay, the corner stone in preventing these diseases is effective tooth-brushing. Many people with ID and those who support them know of the daily effort that is needed to maintain a healthy mouth. Often tooth cleaning can be difficult and feel thankless for all involved.  The benefits, unlike other health promotion activities such as smoking cessation or weight loss programmes, can seem somewhat removed or distant.

 

IDS-TILDA found that while most people with ID in Ireland brush their teeth daily there is a large range of support needs among older adults with ID who often find tooth brushing downright tricky (4). This study concluded that there is a need to promote effective daily brushing using appropriate technique with individualised support for an adequate length of time.

The authors advise all people with ID to discuss this with their dentists and develop an oral healthcare plan, which considers their abilities and meets their individual needs. Here, we include a list of general suggestions, which may help improve effective homecare to empower people with ID to achieve successful ageing (Figure 1).

 

  1. Watch what you eat: Good eating habits should be established in childhood, avoiding the use of food as a reward system.
  1. Brush teeth twice daily: Brushing teeth removes plaque that causes gum disease and decay. The most important area to brush is between the tooth and gum, which is where gum disease can take hold. If gums bleed during brushing, the teeth need to be brushed better in that particular area.
  2. Use the right toothbrush: Where people find it difficult to tolerate tooth brushing, there are specific toothbrushes like the “Superbrush Dr Barmann’s Special”, that act like mini car washes for teeth. While these are often better tolerated, it can take more attention to get good cleaning at the gum margin with these brushes. Google them – try one out!
  3. Choose a time and location when everyone is chillaxed. If brushing seems difficult, check it is not too hard or in a painful area.

Top tip: Check the teeth when they are brushed to see if all plaque is removed.

  1. Use the right toothpaste: For adults a pea-sized amount of a good all- round toothpaste from the supermarket is the perfect choice, as long as it contains Fluoride. It is important not to rinse the paste from the mouth after use: just spit!
  2. Visit the dentist and hygienist: Everyone should visit the dentist at least once a year or more regularly if advised. Visits should start early, so children can become comfortable with the dental surgery and good hygiene habits can be established for life.

 

Figure 1

 

References:

Mac Giolla Phadraig C, McCallion P, Cleary E, McGlinchey E, Burke E, McCarron M, et al. Total tooth loss and complete denture use in older adults with intellectual disabilities in Ireland. J Public Health Dentist. 2015;75(2):101-8.

Mac Giolla Phadraig C, Nunn J, Carroll R, McCarron M, McCallion P. Why do edentulous adults with intellectual disabilities not wear dentures? Wave 2 of the IDS TILDA cohort study. J Prosthodont Res. 2016.

Crowley E, Whelton H, Murphy A, Kelleher V, Cronin M, Flannery E, et al. Oral Health of Adults with an Intellectual Disability in Residential Care in Ireland 2003. Department of Health and Children. 2005.

Mac Giolla Phadraig C, el Helaali R, Nunn J, Burke E, Mccallion P, Mcglinchey E, et al. Reported difficulty tooth and denture cleanin.g among an ageing population with intellectual disabilities in Ireland. J Disab Oral Health. 2014;15(2):48-53

Author Bio

KevKev Mac Giolla Phádraig is an assistant professor in Special Care Dentistry in Trinity College Dublin and the Dublin Dental University Hospital and PhD student with IDS TILDA. He specialises in dentistry for people with disabilities, phobias and medical problems. For further info, his website is www.specialcaredentist.ie .

This article explores the experiences of participants of an Independent Living Skills Group: what they learned; how they learned it; and why decision making is so important in the context of the current Irish disability climate.

  • The government are noticing that it is very important for people with disabilities to make decisions about their lives.
  • A group of people with intellectual disabilities in Dublin came together because they wanted to improve their skills to be more independent at home or to be able to move out.
  • An Independent Living Skills Group was set up for these people to learn the skills that they needed.
  • People in the group learned a lot of practical skills but they said that the most important thing they learned was how to make decisions and that they can learn from each other.
  • This is important because the government wants to make new laws which will mean everyone gets to make decisions about their own lives.
  • Groups like the Independent Living Skills Group can help people to learn the skills they need to make decisions.

Before you leave the house every day, you have already made numerous decisions. You have chosen when to get up, you have chosen whether or not to brush your teeth, you’ve chosen what to wear, and you’ve chosen what to eat for breakfast. Without realising, you have made a significant amount of decisions. When you consider the amount of decisions you make during the time it takes to get up and leave the house in the morning, the amount of decisions made during a lifetime must be enormous.

 

Being able to make decisions is important. It shows that you are independent, responsible and that you have confidence in yourself. It has been identified that we learn how to make decisions by having opportunities to make choices and learn from our experiences. For example, if you decide to stay up late the night before you have to get up early, you feel tired the next day. The next time this situation arises, you may decide not to stay up so late to avoid feeling tired the next day. Therefore, having the opportunity to make decisions, whether they are considered wise or unwise, is paramount in developing decision making skills.

 

In Ireland, the importance of decision making for people with disabilities is slowly being recognised. The right to choose for people with disabilities is beginning to be recognised through the implementation of the New Directions Policy, as well as the promise of the Assisted Decision Making Act and the ratification of the Convention of Rights of People with Disabilities. The recognition of these basic rights suggests that Ireland is beginning to move from a paternalistic, custodial disability culture, to one which recognises the importance of informed decision making and equal citizenship for people with disabilities. Because of this, people with disabilities are beginning to take more control of their lives, as they are experiencing increased opportunities to make decisions. These developments led to the creation of the Independent Living Skills Group.

 

As a result of people with disabilities taking more control over how their lives are run, support workers and advocates in Dublin began to identify a cohort of people with intellectual disabilities who had goals of increasing their independence at home, or had goals to move into their own homes. Although there was significant motivation to achieve these goals, opportunities to develop the skills required did not exist. Therefore, in 2015 the Independent Living Skills Group was created to provide a space for people to learn the skills they required to increase their independence.

 

In 2015, 8 people with intellectual disabilities participated in an Independent Living Skills Group which occurred once a week for 16 weeks. This group was entirely member-led. During the first group session, members identified goals related to independent living, which they aimed to achieve through group participation. Group member goals included developing skills in cooking, budgeting and job seeking. Each week, group members selected group content and took an active role in planning the two-hour session. A piece of research was carried out during the group to explore the group members’ experiences of independent living and group participation.

 

Upon completion of the group, members participated in a group evaluation, which explored the group members’ experiences. Group members reported an improvement in independent living skills related to their initial goals. However, the most significant learning was identified in three key areas; decision making; recognition of the value of peer support; and the exploration of self through assuming group roles.

 

  1. Decision making – ‘making mistakes is okay, because that’s how we learn’.

 

The Independent Living Skills Group was framed by a ‘Will and Preference’ model. This model operated on the principle in that people have the right to make decisions regardless of if they are considered ‘unwise’. Due to this, group members made decisions which would result in ‘undesired outcomes’. These outcomes included burning pancakes; undercooking vegetables; and putting a piece of black clothing in with a white wash. As group members made these mistakes, they participated in group reflection to identify what had happened, and what they could do differently to facilitate their desired outcome. Group members began to identify how their decision making could result in their desired outcomes. On conclusion of the group, members identified these experiences as significant points of learning.

 

  1. Peer support – ‘The people kept me going every week because they all needed help and stuff. Yeah, because they know they can teach me and I can teach them and we can learn from each other. And that’s the best way of learning and it’s a good way to make friends as well.’

The Independent Living Skills Group was entirely member-led. Group members were responsible for selecting group content and planning each group. As a result, group members began to take ownership for group learning. Group members identified that they could learn from others, as they shared a lot of common experiences. It was recognised that group members could provide support and advise each other in relation to independent living goals in ways which the group facilitators could not. This was reported by group members as an empowering experience.

  1. Exploration of new roles – Beforehand I wouldn’t know how to, say, approach a problem or be more friendly with other people. And I know that I was friendly. But (now I can) be more funny’.

Group members took on a variety of roles throughout the duration of the group. These included the ‘joker’, ‘initiator’, ‘information seeker’ and ‘evaluator’, among others. Group members identified that they assumed roles which contrasted with those that they assumed in life outside of the group. Some group members reported assuming roles related to leadership and responsibility, while others explored roles related to humour and friendship. Members reported that an exploration of self and a sense of empowerment was facilitated through the assumption of novel roles.

Why is this important?

Through the exploration of group members’ experiences, it emerged that although the content of the group was important, the most significant learning occurred through group participation and interaction. By actively planning, participating in group activities and engaging in reflection, group members explored the impact of decision making and the experience of empowerment. These experiences were facilitated in an environment in which it was ‘OK to make mistakes’ and where reflection occurred following a decision making process. When contextualised in the current Irish disability climate, the findings of this research present an interesting point of discussion.

As Irish disability culture continues to evolve through the introduction of new policy and legislation, the population affected by these changes must also prepare for change. The findings from the Independent Living Skills Group identified that often, people with intellectual disabilities are not offered the opportunities to make decisions, let alone choose unwisely and make mistakes. This indicates that people with intellectual disabilities, when compared to the general population, have experienced fewer opportunities to develop decision making skills. Therefore, as the importance of informed decision making is being recognised, the decision making skills of those who are going to be making decisions needs to be explored, and opportunities provided to facilitate the development of decision making skills.

Not only did the Independent Living Skills Group identify the need for people with intellectual disabilities to develop decision making skills, it also uncovered a simple yet effective method of doing so. Decision making skills can be developed through group interactions which occur organically as a group works together to achieve meaningful group and individual goals. However, for these skills to be developed, an environment which both accepts that mistakes will happen and lets them occur, is vital. In summary, disability policy and culture is changing, and so must the people whom it will impact. If we want to keep up, we have to act now. Now is the time for people with intellectual disabilities to develop decision making skills through opportunities such as the Independent Living Skills Group where it is ‘OK to make mistakes because that’s how we learn’.

Author Bio

Eve RoseingraveEve Roseingrave is an occupational therapist who recently completed a masters in Trinity College, which explored the concept of Independent Living through the perspectives of people with intellectual disabilities and advocates from the National Advocacy Service.

If anyone would like further information on this group or has an interest in setting one up, contact Eve on roseine@tcd.ie

In this opinion piece, David Quinn, Managing Director of Pascal Software, Board member of Inclusion Ireland and member of the Social Democrat party, has taken a close look at the current Irish taxation system. Here he offers a view of a different way of doing it, to be more equitable and eliminate the poverty trap for low-income earners, which could benefit people at all levels of society, including people with disabilities...

  • Universal income would give every adult a basic income every month.
  • This idea has been looked at and talked about for many decades.
  • It might be a way to free up people to take on other roles in society such as being a carer.
  • It might benefit the lesser well-off parts of society.
  • David Quinn’s figures make interesting reading.

Back in the 1930’s, The New Deal was an imaginative but wholly necessary series of programmes enacted in America between 1933 and 1938. They were inspired and enacted by Franklin D. Roosevelt as the means of ending The Great Depression. It involved all the R’s – Roosevelt, Relief, Recovery, Reform and preventing a Repeat of another depression. Not only did it work but its legacy is still in place today, with the FDIC (Federal Deposit Insurance Commission) and the SEC (Securities & Exchange Commission) amongst several institutions set up at that time. Some learned people suggest that the suspension of The New Deal’s bank regulatory legislation (Glass-Steagall Act) in the 1990’s marked the beginning of our 2008 financial melt-down.

So why do we in Ireland need another New Deal? Are we not recovering and well out of our recession? “Keep the recovery going” – whatever recovery was going on, it wasn’t and isn’t lifting all boats. Many people were and still are drowning in a perfect storm of reduced income, higher cost of living and penal rental costs and for those lucky enough to earn a decent income, are unable to buy their own home. My moral compass puts homelessness as our No.1 priority demanding immediate State provision, but on a wider basis, we also have to address this basic income issue for everyone as well.

What can we do? Increase Social Welfare rates? Increase wages? Take more lower-paid out of the tax net? All well-intentioned measures, but they don’t address the kernel of insufficient basic income for all. We’ve seen the fear and anger and anti-establishment sentiment that were and are a major part of the Brexit and Trump seismic events. And there’s more coming down the tracks, with Marine Le Pen looking to join this motley crew in a journey to God-knows-where. Do we have to put all our hope and faith for the future in the hands of Angela? Geez, how times have changed.

Our Social Welfare system is creaking and arguably, no longer able to provide the comprehensive support structure that our complex society now needs. We have different schemes for different special circumstances – all well-intentioned and absolutely necessary. Disability benefit, job-seekers benefit and allowance, sick-pay, maternity and now paternity benefit are amongst those benefits intended to support those who cannot work. Now, new child-care measures are being introduced. Applications are submitted, considered, approved, reviewed and hopefully they are paid to people who need to put food on the table today – and not in the perhaps 6 weeks or more that these applications might take to process fully. Those interest groups who organise, lobby and get their act together to mobilise their voting power are the ones who go to the top of a long queue for scarce State resources. Those who are tired, not as organised in mobilising their voting strength and too disparate get diddly-squat. There are lots of special-interest groups in the latter, and that includes the disability community.

Parallel to this we have the world-wide change in working patterns. We have no such thing as a ‘job for life’ any more. Science-fiction type stories about robots, automatically-driven cars and artificial intelligence suggest that we’re leaving Kansas with Dorothy, with huge implications for work/leisure life balances.

That said, in comparison with other countries, Ireland has reasonable levels of support paid to children (Child Benefit) of €140 per month and to older people (Contributory and Non-Contributory Pensions of more than €230 per week). But there are all those rules and regulations – some of these benefits are taxable although unlikely to result in actual tax deductions, exemptions for non-pension income up to a certain amount, means-testing, blah, blah, blah. The Irish Social Welfare system is complex, however – what the State gives with one hand can be taken back later as a “claw-back” if circumstances change. All benefits are subject to reviews, audits, appeals and local political intervention. The DSP seems to protect the State’s financial resources like they were minding their own Communion money. Pity the banks’ auditors and Department of Finance regulators weren’t as careful with our assets.

Those earning a regular income have the joys of income tax, social insurance and social charges deducted from their gross income. Revenue uses a variety of acronyms to make these more familiar – PAYE, PRSI, USC, P2C and now LPT, PRD and whatever you’re having yourself. We have different rates and bands and – oh yeah – tax credits as well. Nearly forgot about those – very important in the overall calculation of your tax deductions. Credits sound good, we all benefit from those right? Eh, no, afraid not. If you earn less than €16,500 per annum, you don’t earn enough to make full use of these valuable credits where there is a use ‘em or lose em’ rule. So those earning the lowest incomes get the least benefit from these credits.

Some groups get more credits than others. Some personal expenses are allowable for tax purposes. Not everyone knows what I’m talking about here, which is another reason why many people are not availing of their full entitlement and are currently paying too much tax. And that’s without trying to explain how pension contributions are used as an effective tax avoidance measure. You can check out www.revenue.ie for all of this information.

So why don’t lower-paid workers, whether employed or self-employed, get a refund of their unused tax credits? Nope – that good idea has been rejected by our political leaders, a dreadful, mean-spirited decision. Instead, we have a tax system that has innumerable gaps, loopholes and special provisions that keep the tax consultants in business giving their expertise to those higher up the food chain so as to minimise the higher-earners’ statutory deductions. Nothing illegal of course – tax avoidance is the smart play when we have to look after our own situation, isn’t it? And woe betide you if you accidentally mention tax evasion. You’ll have the libel lawyers write to you quicker than you can spell “o-o-p-s”.

Let me introduce you to an old idea. Basic Income goes back a long way. From Thomas More’s Utopia and the humanist Johannes Ludovicus Vives in the 16th century, to Thomas Paine (one of America’s founding fathers) in the 18th century, the idea was promoted further by French political philosopher Montesquieu when he wrote: “The State owes all its citizens a secure subsistence, food, suitable clothes and a way of life that does not damage their health”. [See History of Basic Income on www.basicincome.org]. It was called Social Dividend when promoted in Britain in the 1920’s where a basic income payment was to represent the return to each citizen on the capital owned by society. And in the 1960’s, J.K. Galbraith supported James Tobin’s proposal for a ‘demogrant’ – a universal, unconditional payment made to all citizens. Martin Luther King’s economic dream was for the government to provide every American with a guaranteed, middle-class income (1).

So no, I’m not proposing a wild wacky new idea. In fact, back in 2000, our government promised to look into the idea for Ireland in An Action Plan for the Millennium, and they published a Green Paper in 2002. It is still available on the Taoiseach’s website (2). Since then, there have been several research papers written, in alphabetical order, by John Baker, Micheál Collins, Seán Healy, Eamon Murphy, Bridget Reynolds, Michael Taft and Seán Ward. As well as Social Justice Ireland advocating for this, there is another group of individuals, Basic Income Ireland, and there is a wealth of background reading on their website, www.basicincomeireland.com.

Earlier this month, Social Justice Ireland hosted a day-long conference: “Basic Income – Radical Utopia or Practical Solution?”(3). In my view, it is both a radical and practical new solution. In John Lennon’s words, let’s imagine . . .

For the purposes of this example, we are using €10,000 as the level of Basic Income that is paid to all adults, with a little extra to our older folk. This is a rounding-up of the current €188 per week job-seekers benefit. A Universal Pension can replace the contributory and non-contributory pensions. The only conditions for receipt is that you are alive and not in prison. You have the choice of taking up paid employment without any risk to losing this Basic Income payment. Mind you, you’ll be taxed – but isn’t that only right, as long as it is fair and reasonable with a progressive tax system in place where those on lower levels of income pay less than those on higher levels? We should want all citizens to be engaged with the cost of the State’s service provision, and the removal of lower-paid earners from the tax net does not achieve that. Indeed, those citizens who don’t pay income tax or USC are implicitly excluded by some commentators who repeatedly refer to “taxpayers” when they should refer to “citizens”. This reinforces the sense of exclusion or semi-detachment of a large group of citizens from such commentary. In truth, all citizens are VAT tax-payers.

Some have suggested that the payment of an unconditional Basic Income would act as a disincentive to work. Yes, there are bound to be a few, but how many people would choose to live on €10,000 alone? There are bound to be changes to work patterns, but with work patterns changing so much, it can only be positive to give citizens more security and freedom to live their lives of choice. The real stumbling block that has prevented this idea from gaining a wider audience and consideration is the cost. How can it be funded out of general taxation? The 2002 Green Paper suggested that a flat tax rate of 48% would be required to fund a Basic Income of €95 per week (just under €5,000 per annum). At that time the top marginal rate of tax/PRSI was 52.5%. Whilst this Green Paper contains discussion of the uncertainty and behavioural consequences, much of the monetary analysis is considerably out-of-date. Other studies have quoted various rates of up to 65%. I know I’m taking a bit of a risk of being ridiculed, but I’ve done calculations that show that by using an imaginative range of tax rates and bands, the State can fund this project whilst holding the top, marginal tax rate to 57%, up from the current 52%. This range of rates addresses many of the negative consequences listed in the Green Paper.

To do this in a revenue-neutral manner, this proposal uses a set of 4 tax and USC rates that result in a perfectly structured progressive tax system, where the effective tax rate starts off from a negative rate, up to zero and then evenly upwards to a rate of 50% for those on a gross income of €200,000.

Subject to further development of this model, and also subject to corrections due to certain assumptions and presumptions included here, this proposal’s figures show the following:

table of figuresCurrent 2016 figures are based on:

Tax Credit of €3,300, Standard Rate Cut-Off point of €33,800, Class A PRSI and Standard USC rates.

Next New Deal calculations are based on:

  • Basic Income of €10,000 paid tax free to everyone
  • No tax credit, 4 rates of Income starting at 10%, then 25%, 40% and top rate of 42%
  • Employee PRSI contribution added to new and higher USC rates of 5%, 10% and 15% with smaller bands
  • Initial USC rate of 40% on the first €10,000. This reflects USC becoming a Universal Social Contribution, helping to fund the universal Basic Income of the same amount
  • Employer PRSI to continue and increase to 15%, in line with other EU States, payable by employers and self-employed.

Note that Revenue’s PAYE tax and USC computer systems, together with most if not all current payroll software providers can cater for up to 5 rates of tax and 5 rates of USC.

So, what is this table is telling us?

  • If you earn €5,000 gross, your total nett income will be €12,500, inclusive of the Basic Income of €10,000, an increase of €7,500.
  • If you earn €50,000 gross, your total nett income is pretty much the same, just €40 lower.
  • If you earn €100,000 gross, your total nett income is just over €3,000 less than the current nett of €60,491.

But more importantly, look at the effective rate of deductions. This table shows that the new nett income starts at €10,000, with “negative” effective tax rates on earnings of up to €24,000. This means that an employee earning up to €24,000 receives more in Basic Income than they pay in tax and USC.

From that point onwards, an employee’s new nett pay continues to be more than the current system until they earn €50,000. After that, the employee is paying more tax/USC than now, with a more progressive tax system showing a gradual increase to an effective tax rate of 50% for employees who enjoy an income of €200,000.

So where’s the catch? Well, apart from the higher-earners’ small increase in their effective tax rates and employers paying a higher PRSI contribution, you tell me.

Who could complain about a new structure of Social Welfare and Tax/USC that provides the following benefits:

  1. Simple, equal provision of State resources to all its citizens
  2. Removes any possible stigma or loss of dignity of having to apply for Social Welfare benefits
  3. Provides a basic income that is sufficient to live frugally if not comfortably, plugging many poverty traps
  4. Allows citizens to exercise choice to pursue entrepreneurial or artistic enterprises in the knowledge that they will continue to have this basic income to tie them over
  5. Allows citizens to choose to take time from paid employment to spend unpaid time providing care to others, including children and older members of their family or other voluntary works
  6. Allows citizens the option to pursue further education or training with the comfort of maintaining a basic income for the duration of the course
  7. Allows citizens who are already in receipt of job-seekers benefit to pursue any possible employment, care or educational option knowing that their Basic Income is not at risk.

I’m sure there are many more benefits – can you think of a set of circumstances where someone you know can’t pursue their preferred course of action because of the imperative of either staying in their current lower-paid job or keeping their benefit entitlement?

On a wider basis, I’m told that there is research to show that raising the income of the lower waged has a really positive consequence on general health and well-being. Mental health is an obvious one here, with the reduction in poverty and stress. Not all poverty traps would be plugged with this New Deal, but it would certainly have a huge influence in guaranteeing an improvement for the most marginalised in our society, including the homeless.

Staying with the macro, the economy would enjoy a significant benefit from the additional spending power of those lower-waged citizens. Economists can help us here, but with an estimated €6bn increase in total nett pay of those earning up to €50,000, there should be a sizeable volume of additional spending, with extra VAT coming into the State’s coffers, extra employment, etc.

And don’t forget the possible elimination of or reduction in a raft of existing special purpose State benefits, such as illness benefit, student grants, enterprise support grants, amongst others. Lots of other benefits will of course be unaffected, such as the household benefits package, free travel, DCA, one-parent family payments, etc.

Figures available from Revenue have been used in this model to show that the State can afford to make this happen. Calculations have been made to compute the change in State revenues arising from this proposal. Rates and bands could be tweaked further to ensure that this remains revenue-neutral. These calculations would need to be reviewed and validated by eminent experts in this field. Those experts might also be able to put figures on the other financial consequences of this major far-reaching seismic change in public policy. But the structure of a Basic Income plus an imaginative use of tax and USC rates and bands can work.

Are we up for it? Have we, as a country, not shown a willingness and eagerness to embrace major changes in our lives – in my lifetime, we’ve had the EEC/EU, the euro currency, no-smoking ban, divorce, same-sex marriage, to name a few. We changed our PAYE system from the old tax tables and tax-free allowances to the current system pretty much overnight. To quote Obama, “yes we can” be progressive and radical. Remember that the proposed Basic Income of €10,000 amounts to only 55% of the average nett pay if you were on the minimum wage, so nobody will go wild on it. But it guarantees the ability to live frugally, without oversight or assessment by any State body or official. That has to improve one’s self-respect and, over time, it will allow every citizen to seek to pursue their preferred activities, paid and unpaid.

Once we guarantee this basic dignity and income to all citizens, then the State can continue to address its responsibilities to meet the needs of those who need extra, additional support – the homeless, the sick and the families affected by the additional cost of disability come to mind immediately!

The 2002 Green Paper quotes an article by Bill Jordan discussing the writings on Philippe Van Parijs (1992):

“Other commentators have argued for Basic Income as the only effective remedy for social exclusion, seeing means-tested social assistance schemes as are prevalent throughout the Developed World as creating a permanent underclass. A Basic Income system overcomes this problem by removing the poverty and unemployment traps, thus giving the excluded minority access to the market system of reward for individual effort, and secondly by giving everyone a universal share of resources on grounds of membership (citizenship), thus acting as a mechanism for including all in the common good. Seen in this light, Basic Income is a necessity to preserve democracy in the face of deteriorating social relations and withdrawal of participation by those who feel excluded”.

And that was written nearly 25 years before Brexit and Trump!

As a nation celebrating 100 years since the proclamation that promised so much, I submit that it is time for us to look at a better way of meeting the needs of our citizens – all of our citizens, equally and fairly and transparently. Let’s all start imagining . . .

 

References:

(1) Martin Luther King “Where Do We Go From Here: Chaos or Community” 1967

(2) Social Justice Ireland “Basic Income – Radical Utopia or Practical Solution?” Croke Park, 22nd November 2016 http://www.socialjustice.ie/content/civil-society-policy/social-policy-conference-2016

(3) Basic Income: Government Green Paper September 2002 http://www.taoiseach.gov.ie/upload/publications/1660.pdf

Author Bio

David Quinn is Managing Director of Pascal Software, is a member of the Board of Directors of Inclusion Ireland and is also a member of the Social Democrat party.

  • Disability is a concern when deciding whether a person can be a good parent
  • A parent’s disability should not be the only thing that stops them being a parent
  • Being exploited may stop them being a parent too
  • Social workers need to be consistent when deciding whether a parent can be a parent
  • Courts need to help people get the support they need to be a parent.

In late 2015, the Child Law Project published its final report. This was a three- year project, where the team of lawyers and academics, led by journalist Carol Coulter, sat in on over 1,200 child care cases.

Whenever an order was being sought – in other words, where the State was moving to take a child into care, or to heavily supervise their care in the family home – the report found that 15.4% of the time, the reason for seeking the order was parental disability (intellectual, mental, physical). Shockingly, this was the most frequently cited reason for seeking an order. Neglect, at 15.3%, was the second most frequently cited reason.

The prevalence of disability as a reason for seeking an order is of huge concern. It raises questions about whether parents in this group are receiving adequate supports, whether social workers are educated about the kinds of specialist supports that are required, and whether these parents face a bias on the part of some social workers in relation to their parenting ability.

On a legal basis, it also raises the question of whether the rights of the parents are being breached. Disability as a single ground for initiating child care proceedings would be a clear breach of the Equal Status Act 2000. Plus, if a parent with ID is more likely to come before the courts in these kinds of cases, then it has to be asked whether those individuals are being discriminated against.

The reports found that at 10%, the single biggest factor leading to a case coming to court was the mental health of one or both parents. In almost 7.5% of the cases, the parent – usually the mother – had a cognitive disability. The authors felt that this was likely to be an under-representation as in some cases where alcohol or drug abuse, or severe neglect dominated the proceedings, undiagnosed cognitive disability was likely to have been a factor.

The authors also found that there was a haphazard approach to the diagnosis of these cognitive disabilities. They frequently saw cases where the issue arose in the middle of the hearing.

Parenting capacity assessments would sometimes be carried out before a cognitive assessment: the authors noted that when this happens, and if the person’s cognitive capacity is not taken into account, then they are bound to fail a conventional parenting capacity assessment. On another occasion, a report on the cognitive ability of a parent was referred to, yet it had been carried out years previously and prior to the person becoming a parent.

The matters that the authors saw before the court also raised issues in relation to the sexual exploitation of women with reduced cognitive ability:

“There are also cases where a person’s cognitive ability is so impaired that it is unlikely she can ever parent a child, no matter what level of support is offered. We have attended a number of cases where the court has heard the mother in the case had the mental capacity of an eight or nine year old, and evidence was also given of her likely victimisation through sexual exploitation. This raises wider issues relating to the protection of vulnerable adults as well as children.”

The report also found that 74% of the parents were parenting alone. As the authors pointed out, “Parenting alone is difficult for anyone, even those of full ability and with strong social networks. As we have seen, many of these parents suffered from disabilities or addictions, and our reports show that they also often suffered from social isolation, so were particularly vulnerable.”

A stark picture emerges of cognitive vulnerability, both in the parents and the children in these cases, and in particular single mothers (30% of the respondents). As the report notes, “the prevalence of disability and ethnic minorities among the respondents raises questions about the provision of services to these groups”. Later it notes, “again and again, questions were raised about the availability of such services”.

Case study

In a District Court hearing, a full Care Order for two sisters was granted. The sisters – both teenagers – had not been attending school. Their mother had limited cognitive ability and mental health problems. She was parenting alone.

The mother’s barrister raised the issue of her cognitive impairment and whether this was taken into account by the social workers. An education and welfare officer had called to the house of the mother to inform her about her legal responsibilities in relation to sending her children to school. In court, he was asked if he was aware that the mother had a borderline intellectual disability: he said he was not aware.

It turned out that the officer was aware that the mother was attending mental health services, but he did not take the initiative to get a cognitive assessment of the mother because “I was aware she was attending other services. That is their area of expertise”. When asked if he ever checked out the mother’s capacity to understand what was required, he said no.

A blatant lack of communication across the services, joined-up thinking, or case management comes across clearly in this.

When a cognitive assessment was carried out, on the instructions of the Child and Family Agency, the psychologist found that the mother was at the fourth percentile of cognitive ability, meaning 96 per cent of the population would have a higher ability. The psychologist commented:

“Her concrete style of thinking was very black and white. If the child said she was sick and could not go to school, it meant she could not go to school. She could not question how sick she was. I would have big concerns about her insight into safety issues with her children.”

The psychologist also found that if the mother was given a number of tasks, she would find it difficult to prioritise and to follow instructions. The mother’s barrister asked if the mother could manage if the tasks were presented in simplified language, one task at a time: the psychologist said yes.

On the other hand, in the same case, the supports that were provided didn’t have sufficient impact. The view of the psychologist was that the social workers did as much as they could in the circumstances. The following is a number of questions put by the mother’s barrister to the psychologist:

Barrister: “People on the fourth percentile can have and raise children?”

Psychologist: “Absolutely. It depends on what supports they have and also what is going on in the rest of their environment.”

Barrister: “If supports were put in place for the mother that may be of assistance for her?”

Psychologist: “It may be. But I understand that she did receive a number of supports.”

The court report went on to summarise the psychologist’s position:

The psychologist’s report said 24-hour parenting support would be necessary, that is, someone on call all the time. It would be difficult for the children to have all their needs met. There had been numerous social workers calling but change, while it occurred, was not sustained. Abstract thinking was very, very difficult for the mother.

Referring to the mother changing, she said: “My concern is, how long do her daughters have to wait? The question is whether the change is long-term, consistent, and how much change. I saw the social workers give instructions, model the instructions, repeat them. It suggests that when someone is there with her on a one-to-one basis she can make some changes. I don’t know how sustainable they are. Her capacity to change does not match the children’s changing development needs as teenagers.”

The teenage siblings went from living fulltime with their mother, to being together in foster care. Access included lunches and shopping trips with their mother, plus phone contact. The social workers wanted to reduce access to one hour per week with a support worker present, and they also wanted to reduce phone contact. It is not explicit in the report why this was required, though there was an implication that the girls, particularly the elder daughter, were shouldering their mother’s problems.

Giving her decision, the judge said: “The mother is not capable of doing what she needs to do in a time-frame that meets the needs of the children. The sad thing is that for a period of time the children were more than adequately cared for by their mother. But due to her cognitive ability she was not able to meet their needs as they got older.

“She is one of the best-intentioned persons we’ve seen here. We all want to put the best side out, but at the time they came into care the children were suffering from neglect. I will grant full Care Orders until B completes her Leaving Cert. I want a review every year, including of where the children live.

“In relation to access, what is happening in [the child and family centre] is very cruel. Access is not for the mother, it is for the children. The mother did work with [the local social services] but by the time of the assessment she had slid back. That is why [the centre] made the recommendations it did at this time.”

She made a direction under Section 47 that the children receive therapeutic support relating to their being in care, access visits and their relationship with their mother, in line with recommendations from the GAL. In four months’ time the court would deal with access, after-care and therapeutic supports.

“I want the mental health services to provide all the supports needed by the mother. She’s been absolutely marvellous. She attends all appointments, obeys all instructions. I look forward to positive news about what happens in the future,” the judge said.

Author Bio

Kate ButlerKate Butler BL is a practising barrister and a board member of Inclusion Ireland, a representative group for people with intellectual disabilities. She is available to give talks on this topic.

Parents and parenting with intellectual disabilities

  • Intellectual disability is a poor indicator of parenting competence
  • Many children brought up by parents with intellectual disability fare well
  • Parents with intellectual disability can learn and maintain new parenting skills
  • Services are generally ill-equipped to support parents with intellectual disability
  • Many parents with intellectual disability are thwarted by poverty and prejudice

In the early part of the 20th century, persons with intellectual disabilities[1] found themselves treated as social pariahs. By some accounts, the ‘feeble-minded’ were moral degenerates and the root cause of society’s ills. Allowing them to reproduce was for many, at that time, unthinkable. Eugenic sterilisation was legislated and vigorously implemented in many jurisdictions “for the protection and health of the State” (see Buck v Bell, 274 US 200). The discourse has changed radically over the last 100 years.  Today, the right of persons with disabilities, including persons with intellectual disability, to “marry and found a family” is affirmed in the United Nations Convention on the Rights of Persons with Disabilities (2006). Under Article 23, States Parties are required to take “effective action” to “eliminate discrimination”, and to render “appropriate assistance” to persons with disabilities in the performance of their child-rearing responsibilities.

There are now 400-plus published empirical studies on the topic of parents and parenting with intellectual disability (IASSID Special Interest Research Group on Parents and Parenting with Intellectual Disability, 2008). The earliest studies in the field addressed the question of heritability. These studies found that, although intelligence is influenced by genes, the vast majority of children born to parents with intellectual disability have ‘normal’ intelligence (e.g., Brandon, 1957; Reed & Reed, 1965). From the 1980s onwards researchers turned their attention to the support and learning needs of parents with intellectual disability, and more broadly, the determinants of parenting and child outcomes.  This research has enriched our understanding and dispelled numerous myths.  In this brief report, we outline some important messages from this research.

For an excellent introduction to the topic, see “Parents with Intellectual Disabilities: Past, Present and Futures” (2010, edited by G Llewellyn, R Traustadottir, D McConnell and H Sigurjonsdottir, Wiley-Blackwell).

Parents with intellectual disabilities: Who are they?

The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD), Special Interest Research Group on Parents and Parenting with intellectual disabilities (2008), identifies three discrete groups of parents. The first and numerically smallest group includes parents who had been institutionalised but now live in the community. The second group comprises parents who were never institutionalised but have received services designated for persons with intellectual disabilities more or less continuously throughout their lives. The third group, described as the hidden majority, includes parents who may have been labelled as being a ‘slow learner’ or ‘developmentally delayed’ during their school years,  but on leaving school managed to get by with little or no formal support, that is, until they had children.

Message 1. Intellectual disability is a poor proxy for parenting competence

One consistent research finding is that parents with intellectual disability are diverse with respect to parenting skills. There is general agreement among researchers in the field that, above an IQ score of 60, no systematic relationship exists between IQ and parenting competence (Andron & Tymchuk, 1987; Budd & Greenspan, 1984; Dowdney & Skuse, 1993; Feldman, 1986; Tymchuk, 1990).  As far back as 1984, researchers had reached the conclusion that “few generalisations can be made about the parenting abilities of mentally retarded women”, therefore “each family deserves to be examined on an individual basis for specific child-rearing strengths and weaknesses” (Budd & Greenspan, 1984, p. 488). Furthermore, the available data suggest that any parent with intellectual disability may demonstrate competence in one domain (e.g., sensitive responding) or period of child development, but struggle do so in another. The implication is that parenting competence is not a stable individual trait.

The question then is: how can the observed variation in the skills or competences of parents with intellectual disability be explained? The available data suggest that the learning opportunities and support afforded by the environment, which may be competence-inhibiting or competence-enhancing, is one key determinant (Booth & Booth, 1994; Tucker & Johnson, 1989; Llewellyn & McConnell, 2002). Another is the complexity and intensity of the childcare workload.  That is, the observed variation in parenting performance may be explained, at least in part, by variation in parenting demands (e.g., demands associated with child behaviour problems). A third key determinant is parent health, including physical and mental health, and health behaviours: Poor nutrition, sleep deprivation, depression and so on can impair parenting performance.

Message 2. Parents with intellectual disability can learn parenting skills

There is unequivocal evidence demonstrating that, with appropriate instruction and support, parents with intellectual disability can learn parenting skills. [For excellent reviews of the parenting training research in the field, see Feldman (1994) and more recently Wade, Llewellyn & Matthews (2008)]. The evidence comes from 30 ++ studies, employing single-system, quasi-experimental and randomised controlled trial designs, to investigate the efficacy of various parenting interventions. This research, conducted mostly in North America, England and Australia, has documented positive outcomes with substantial effect sizes in areas such as basic childcare, child health and home safety, and parent-child interactions (Feldman, 1994, 2010; Llewellyn, 1990; Llewellyn et al., 2010; Tymchuk, 1992).

Interventions that have demonstrated efficacy share a number of common features. Firstly, effective training is usually delivered in situ, e.g., in the family home, where new skills will be applied. Second, effective training is tailored to each parent’s individual learning needs and priorities, usually based on a competency-based parenting assessment (see Feldman & Aunos, 2010). Third, training incorporates behavioural teaching strategies including modelling (i.e., the parent is shown, and not merely told ‘how’); opportunities for practice, ideally in a variety of activity settings to promote generalisation; the use of prompts as needed to elicit correct performance; the positive reinforcement of correct performance, usually with praise; and the gentle correction of errors. Video-feedback intervention is also showing promise (Hodes, Meppelder, Moor, Kef & Schuengel, in press).

Message 3. Health and wellbeing outcomes for their children are mixed

Most children born to parents with intellectual disability appear to fare well, often despite early disadvantage [see Collings and Llewellyn (2012) for a useful review and synthesis of the research on child experiences and outcomes].  Notwithstanding, parental intellectual disability is associated with a heightened risk of developmental disabilities, speech and language delays, emotional and behavioural problems, and accidents and injuries (Emerson & Brigham, 2014; Feldman, McConnell & Aunos, 2012; Llewellyn & Hindmarsh, 2015; McConnell, Llewellyn, Mayes, Russo & Honey, 2003). Familial transmission is one contributing factor. Pre-natal exposure to toxins, pre-term delivery and low birth weight may be another (Höglund, Lindgren & Larsson, 2012; McConnell, Mayes & Llewellyn, 2008; Mitra, Parish, Clements, Cui & Diop, 2015). A third factor is developmental deprivation. Without appropriate support, parents with intellectual disability, on average, interact less with their children compared with their peers, and may afford less safe, supportive and stimulating home environments (Aunos, Feldman & Goupil, 2008;  Feldman, Sparks & Case; 1993; Keltner, 1992; Keltner, Wise & Taylor, 1999).

The relationship between parental intellectual disability and child developmental deprivation is however confounded by contextual influences including parent life-history and exposure to environmental adversity. Parents with intellectual impairment are more likely to have experienced trauma in their own childhoods:

  • to be single parents, unemployed and living in poverty, in poor housing and in deprived neighbourhoods;
  • to have few social supports; and
  • to suffer from often unmanaged chronic physical and mental health conditions (Aunos, Feldman & Goupil, 2008; Emerson & Brigham, 2013; Feldman, McConnell & Aunos, 2012; Llewellyn, McConnell & Mayes, 2003; McGaw, Shaw & Beckley, 2007; McGaw, Scully & Pritchard, 2010).

Few studies have attempted to isolate the effect of parental intellectual impairment from such contextual influences. One recent population-based study found that the increased risk of poor developmental health associated with maternal intellectual disability could be explained, in large part, by socio-economic disadvantage and low maternal social support (Emerson & Brigham, 2014).

Message 4: Many parents with intellectual disability have their children taken from them by child welfare authorities

The harsh reality is that many parents with intellectual disability have their children taken from them by child welfare authorities. While the population prevalence of intellectual disability may be no greater than one percent, parental intellectual disability or ‘cognitive impairment’ is documented in approximately ten per cent of child maltreatment investigations, and more than twenty per cent of investigations that result in child apprehension and out-of-home placement (Booth, Booth & McConnell, 2005, Llewellyn, McConnell & Ferronato, 2003; McConnell, Feldman, Aunos & Prasad, 2010, 2011; Tossebro, Midjo, Paulsen & Berg, in press).

The over-representation and differential outcomes for children of parents with intellectual disability in child maltreatment investigations is not easy to reconcile with evidence showing that (a) the association between parental intellectual disability and parenting competence is not strong, and (b) that with appropriate training and support, most parents with intellectual disability can learn and maintain parenting skills, with concomitant benefits to their children. A partial explanation for the high rate of state intervention into these families is the clustering of other ‘risk and vulnerability factors’ together with parental intellectual disability, including but not limited to poverty, social isolation and mental health issues (McConnell et al., 2010, 2011).

The chief factor contributing to the over-representation of children of parents with intellectual disability in the out-of-home-care system, is the lack of suitable supports and services. Research has uncovered a number of barriers to, and deficiencies in the planning and delivery of services to parents with intellectual impairment and their children (Clayton, Chester, Mildon & Matthews, 2008; Goodinge, 2000; LaLiberte, 2013; McConnell, Llewellyn & Bye, 1997; Wade, Mildon & Matthews, 2007; Ward & Tarleton, 2007). These include but are not limited to:

  • The conflation of parental intellectual impairment with perceived parenting deficiencies, resulting in a failure to consider plausible alternative explanations for any perceived deficiencies (e.g., environmental pressures) and, the wrongful assumption that parenting deficiencies are irremediable;
  • Shortcomings in the assessment of parenting capacity and support needs, including the tendency to focus on (a) parent traits, such as IQ, instead of how parents and children function together in their environments; and (b) parenting deficits, instead of their strengths and how to build on them;
  • Resource-led service planning in which parents are fitted into existing services rather than services being designed to fit their needs. This process of planning tends to be program-driven rather than citizen-centred, allowing little scope for parent participation;
  • Failure to utilise evidence-based parenting training strategies (i.e., ‘what works’ for parents with intellectual impairment). All too often parents with intellectual disability are referred to programs that fail to accommodate their learning needs;
  • A blinkered focus on parenting training, resulting in the neglect of other potential parent needs, such as the need for trauma, grief and/or relationship counselling, health care (e.g., mental health and addictions), safe housing and financial aid, and positive social relationships;
  • A lack of flexibility with respect to support intensities and service timeframes. Many parents with intellectual impairment may need intermittent support, of varying intensity, over the long term. A related concern is that families often have to wait until a crisis erupts before services respond;
  • Lack of co-ordination across services, resulting in many parents with intellectual impairment either ‘falling through the cracks’ or an overwhelming number of agencies and workers involved with the family, each placing different and sometimes competing demands on the parents.

Parents and parenting with intellectual disabilities: New directions

In conclusion, we are today witnessing a historical shift from a focus on individual deficits (presumed parenting deficits of parents with intellectual disability) to a focus on systems deficiencies. The question is, “how can we build systems’ capacity to support parents with intellectual disability and promote a healthy start to life for their children?” This reflects the understanding that the difficulties experienced by many parents with intellectual disability have as much or more to do with our failure to offer broad-spectrum, evidence-based supports, than it does with intellectual disability per se. This shift is evidenced, for example, by Australia’s Healthy Start strategy, a federally funded initiative, led by consortium partners, the University of Sydney and the Parenting Research Centre, to build national capacity to improve health and wellbeing outcomes for children whose parents have learning difficulties.  The Healthy Start website (www.healthystart.net.au) is an excellent place to start searching for information and resources to support professional practice. The site includes a wealth of information,

References

Andron, L. & Tymchuk, A. (1987). Parents who are mentally retarded. In: C.A. Craft (Ed.). Mental Handicap and Sexuality: Issues and Perspectives (pp. 238–62). Tunbridge Wells: Costello.

Aunos, M., Feldman, M., & Goupil, G. (2008). Children of mothers with intellectual                disability: a link between home environment, parenting abilities and children’s behaviours. Journal on Applied Research in Intellectual Disability Special Issue, 21(4), 320-330.

Booth ,T., & Booth, W. (1994). Parenting under pressure: Mothers and fathers with learning difficulties. Buckingham, UK: Open Press University.

Booth, T., Booth, W., & McConnell, D. (2005). Care Proceedings and Parents with Learning Difficulties:  Comparative Prevalence and Outcomes in an English and Australian Court Sample. Child & Family Social Work, 10, 353-360.

Brandon M. W. G. (1957). The intellectual and social status of children of mental defectives. Journal of Mental Science, 103, 710–738

Budd, K. S., & Greenspan, S. (1984). Mentally retarded mothers. In E. Blechman (Ed.), Behavior modification with women (pp. 477-506). New York: Guilford Press.

Clayton, O., Chester, A., Mildon, R., & Matthews, J. (2008). Practitioners who work with parents with intellectual disability: Stress, coping and training needs. Journal of Applied Research in Intellectual Disabilities, 21(4), 367-376.

Collings, S., & Llewellyn, G (2012). Children of parents with intellectual disability:  Facing poor outcomes or faring okay? Journal of Intellectual & Developmental Disability, 37(1), 65-82.

Dowdney, L., & Skuse, D. (1993). Parenting provided by adults with mental retardation. Journal of Child Psychology and Psychiatry, 34(1), 25-47.

Emerson, E., & Brigham, P. (2013). The health of parents with intellectual disabilities. Journal of policy and practice in intellectual disabilities, 10(2), 118-119.

Emerson, E., & Brigham, P. (2014). The developmental health of children of parents with intellectual disabilities : Cross sectional study. Research in Developmental Disabilities, 35(4), 917-921.

Feldman, M.A., McConnell, D., & Aunos, M. (2012). Parental cognitive impairment, mental health and child outcomes in a child protection population. Journal of Mental Health Research in Intellectual Disabilities, 5(1), 66-90.

Feldman, M. A., Sparks, B., & Case, L. (1993). Effectiveness of home-based early intervention on the language development of children of mothers with mental retardation. Research in Developmental Disabilities, 14(5), 387-408.

Feldman, M. A. (1986). Research on parenting by mentally retarded persons. Psychiatric Clinics of North America, 9(4), 777-796.

Feldman, M.A. (1994). Parenting education for parents with intellectual disability: A Review of Outcome Studies. Research in Developmental Disabilities, 15, 299-332.

Feldman, M.A. (2010). Parenting education programmes. In G. Llewellyn, R. Traustadottir, D. McConnell, & H. B. Sigurjonsdottir (Eds.), Parents with intellectual disabilities: Past, present and futures, (pp. 107-136). Chichester, UK : John Wiley & Sons.

Feldman, M.A., & Aunos, M. (2010). Comprehensive, competence-based parenting assessments for parents with learning difficulties and their children. Kingston, NY: NADD Press.

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

Hodes,M., Meppelder, M., Moor, M., Kef, S., & Schuengel, C.  (in press). Using video-feedback intervention for positive parenting to diminish parenting stress among parents with intellectual disabilities: A randomized controlled trial. Journal of Applied Research in Intellectual Disabilities.

Höglund, B., Lindgren, P., & Larsson, M. (2012). Pregnancy and birth outcomes of women with intellectual disability in Sweden: a national register study. Acta obstetricia et gynecologica Scandinavica, 91(12), 1381-1387.

IASSID Special Interest Research Group on Parents and Parenting with Intellectual disability. (2008). Parents labelled with Intellectual Disability: Position of the IASSID SIRG on Parents and Parenting with Intellectual disability. Journal of Applied Research in Intellectual disability, 21, 296-307.

Keltner, B. R. (1992). Caregiving by mothers with mental retardation. Family & Community Health, 15(2), 10-18.

Keltner, B. R., Wise, L. A., & Taylor, G. (1999). Mothers with intellectual limitations and their 2-year-old children’s developmental outcomes. Journal of Intellectual and Developmental Disability, 24(1), 45-57.

LaLiberte, T. L. (2013). Are We Prepared? Child Welfare Work with Parents with Intellectual and/or Developmental Disabilities. Journal of Public Child Welfare, 7(5), 633-657.

Llewellyn, G. (1990). People with intellectual disability as parents: Perspectives from the professional literature. Australia and New Zealand Journal of Developmental Disabilities, 16, 369-380.

Llewellyn, G., Hindmarsh, G. (2015). Parents with intellectual disability in a

population context. Current Developmental Disorders Reports, 2(2), 119-126.

Llewellyn, G., & McConnell, D. (2002). Mothers with learning difficulties and their support networks. Journal of Intellectual Disability Research, 46(1), 17-34.

Llewellyn, G., McConnell, D., & Mayes, R. (2003). Health of mothers with intellectual limitations. Australian and New Zealand Journal of Public Health, 27(1), 17-19.

Llewellyn, G., Traustadottir, R., McConnell, D. &. Sigurjonsdott, H. B (Eds.). (2010). Parents with intellectual disabilities: Past, present and futures. UK: Wiley-Blackwell.

McConnell, D., Feldman, M., Aunos, M., & Prasad, N.G. (2011). Parental cognitive impairment and child maltreatment in Canada. Child Abuse and Neglect, 5, 621-632.

McConnell, D., Feldman, M., Aunos, M. & Prasad, N. (2010). Child maltreatment investigations involving parents with cognitive impairments in Canada. Child Maltreatment, 16(1), 21-32.

McConnell, D., Llewellyn, G., & Bye, R. (1997). Providing services for parents with intellectual disability: Parent needs and service constraints. Journal of Intellectual and Developmental Disability, 22(1), 5-17.

McConnell, D., Llewellyn, G., Mayes, R., Russo., D., & Honey, A. (2003). Developmental profiles of   children born to mothers with intellectual disability. Journal  Intellectual & Developmental Disability, 28(2), 122-134.

McConnell, D., Mayes, R., Llewellyn, G. (2008). Women with intellectual disability at risk of adverse pregnancy and birth outcomes. Journal of Intellectual Disability Research, 52, 529-535.

McGaw, S., Shaw, T., & Beckley, K. (2007). Prevalence of Psychopathology across a service population of parents with intellectual disability and their children. Journal of policy and practice in Intellectual disability, 4(1), 11-22.

McGaw, S., Scully, T., & Pritchard, C. (2010). Predicting the unpredictable? Identifying high-risk versus low-risk parents with intellectual disabilities. Child abuse & neglect, 34(9), 699-710.

Mitra, M., Parish, S. L., Clements, K. M., Cui, X., & Diop, H. (2015). Pregnancy Outcomes Among Women with Intellectual and Developmental Disabilities. American journal of preventive medicine, 48(3), 300-308.

Reed E. W. & Reed S. C., (1965). Mental Retardation: A Family Study. Saunders, Philadelphia.

Tøssebro, J., Midjo, T., Paulsen, P., & Berg, B. (in press). Prevalence, trends and custody among children of parents with intellectual disabilities in Norway. Journal of Applied Research in Intellectual Disabilities.

Tucker, M.B., & Johnson, O. (1989). Competence promoting versus competing inhibiting social support for mentally retarded mothers. Human Organization, 48, 95-107.

Tymchuk, A. J. (1990). Parents with Mental Retardation A National Strategy. Journal of Disability Policy Studies, 1(4), 43-55.

Tymchuk, A. (1992). Predicting adequacy of parenting by people with mental retardation. Child  Abuse and Neglect, 16, 165-178

Wade, C., Llewellyn., G., & Matthews, J. (2008). Review of parenting training interventions for parents with intellectual disability. Journal of Applied Research in Intellectual Disabilities, 21, 351-366.

Wade, C. M., Mildon, R. L., & Matthews, J. M. (2007). Service Delivery to Parents with an Intellectual Disability: Family‐Centred or Professionally Centred?. Journal of Applied Research in Intellectual Disabilities, 20(2), 87-98.

Ward, L., & Tarleton, B. (2007). Sinking or swimming? Supporting parents with learning disabilities and their children. Tizard Learning Disability Review, 12(2), 22-32.

[1] The term “learning disabilities” may be more frequently used in the United Kingdom

Author Bio

davidDavid McConnell, PhD, is Professor and Director of the Family and Disability Studies Initiative, Department of Occupational Therapy, Faculty of Rehabilitation Medicine, University of Alberta, Canada.  Professor McConnell is an international leader in the field of parents and parenting with intellectual disability.

 

 

LauraLaura Pacheco, PhD, is a clinical social worker, post-doctoral researcher and coordinator of the parenting service at the CUISSS-ODIM (West Montreal Readaptation Center), Montreal, Canada. Her doctoral research focused on the experiences of mothers with intellectual disabilities from ethno-cultural communities in Canada.