How to Oppose The Dossiers on Autistic Children

How To Oppose the Dossiers on Autistic Children by the Dept. of Health and the Dept. of Education

On Thursday 25th March 2021, many of us woke to shocking news as the story broke regarding reported dossiers that were built about Autistic children and their families. This is our Response. 

Introduction

On Thursday 25th March 2021, many of us woke to shocking news as the story broke regarding reported dossiers that were built about Autistic children and their families. News articles were shared widely amongst the Autistic community, with sadness and horror at the lows the Departments of Health and Education could stoop to. As we patiently waited for Prime Time RTÉ Investigates to air, several had already started talking amongst ourselves about what we could do to help.

Dossiers Information

For those of you that aren’t aware: On 25th March 2021, RTÉ Investigates reported that the Department of Health and the Department of Education had been compiling information about Autistic children and their families who had previously been involved in legal actions against the State. This information was taken from consultants, psychologists, GPs, public health nurses, school reports, and other places where we expect our information to be private. 

Some dossiers included not only information about the Autistic children but photographs and videos of the children in great distress also. Information was also recorded regarding other family members, for example, the siblings’ welfare and the parents’ mental health status. This data seems to have been collected for the purpose of discerning times when the families might be under additional stress and open to dropping or settling any actions.

As Nem Kearns from DWI states they are appalled by “the Department of Health’s practices in gathering private, sensitive information on individuals involved in litigation against the State, and on their family members. These are families who, in being forced to take legal action against the Department of Health, the Department of Education, and/or the HSE in order to assert the basic rights of their children, were then exposed to targeted information collection on the part of these same State agencies”.

While originally it was stated that 48 cases were affected, Fiona Ferris highlighted in an AsIAm webinar about the revelations that there could be up to 400 cases involving these dossiers [Please see Update below]. Anne Rabbitte, Minister of State for Disability, also alluded to hundreds of families being affected in her speech to the Dáil on the matter. Not only was this information shared with the Department of Health and Department of Education without the families’ consent, but it seems that it was freely available to any civil service employee from within the Department of Health.

The deliberate sharing of sensitive, private information about Autistic children’s impairments and family lives in order to create barriers to essential services is

1) not in line with the rights of people with disabilities under the UNCRPD or the protection of those seeking justice under the Equal Status Act, 2000,

2) against doctor-patient confidentiality and a direct breach of the ethical guidelines that all healthcare professionals are expected to follow,

3) against the right of privacy to the Autistic individual and their family in accordance with European and Irish Data Protection Legislation.

Simon McGarr, a GDPR expert, explains the issue in a very accessible and articulate manner on his Twitter account.

AAI Information

On Friday, 26th March 2021, literally the day after, a group of concerned and ambitious Autistic adults produced a statement about the show, a petition (with the generous help of Uplift), and came together under the name of Autistic Adults Ireland (AAI). Working together, we realised that this issue could have impacted us all as Autistic individuals who need to disclose very personal information just to receive the supports we are entitled to but also as parents and caregivers of Autistic children. Some of the people in the group are likely to have been directly affected by this. Since then we have been planning in the background how to tackle this issue and realising there are more issues we want to take on in the future. 

As Autistic people, carers and families of Autistic people, we are deeply concerned about the deliberate breach of trust and the continued failure to respect our equal right to dignity and privacy shown by the systemic sharing of our intimate medical information and private family matters in these dossiers.

Demands

Regarding this invasion of privacy of Autistic children and their families, AAI is demanding:

1) That the affected families are fully informed.

Many of these children are now adults; they and their families must be contacted to be informed that their private information has been shared without their consent.

2) That Autistic children have equitable access to appropriate education and that their right to privacy and dignity is given due respect. 

As Autistic people and parents/carers of Autistic children, we are now concerned that our relationships with our healthcare professionals and other support networks are not the private spaces that they are for others. We should not have to continually advocate and fight for the same access to education that is afforded to non-disabled people and we are appalled that the Department of Health would go to such shocking lengths to create barriers against us accessing basic services such as education.

3) That public trust is restored by the commissioning of a transparent, independent investigation. 

There remains a distressing lack of clarity as to the services and practitioners involved in sharing this sensitive information and as to which families have been the victim of this ‘legal strategy’. Not only was sensitive information gathered on plaintiffs and other members of their families without their knowledge, but also have these families yet to receive assurances about how long the Department intends to hold this information and as to how this data may be used, stored, or dispersed in the future. 

We are also extremely concerned at the Department’s description of this information collection as ‘normal practice’ and believe it has worrying implications for all those forced to seek litigation against the HSE or the State, for example, those involved in the Cervical Check cases.  The purposeful garnering of information without the consent of families involved requires urgent independent investigation and the findings of such investigation must be made public. This practice has to be immediately discontinued to ensure the rights of Autistic individuals, their families, and anyone else involved in litigation against State agencies are protected into the future. 

Additionally, The Irish Human Rights Commission should be supported to investigate the potential legal and human rights issues involved in this breach of privacy and the entire process used in compiling these dossiers—the solicitation of practitioners to gather data, the availability of data to wide sections of the public service, and the intended use of the data—needs thorough investigation by the Data Protection Commissioner in order to restore public trust in the instruments of the State. 

We ask Public Representatives to keep the pressure in the Dáil to push for

– A transparent, independent investigation.

– All affected people to be informed if their data was misused and shared without their consent.

– Inclusive education for all children in Ireland, including access of AEN students to SNAs.

Call to Action

We call on everyone to join us in a few actions:

Sign this petition

Email your TDs

This can be done simply by following this link, following the instructions shown, and adjusting the letter to include why you are invested in this action, if you wish—this may be because you are Autistic, you have an Autistic child, both, you are neurodivergent, you are Disabled, you are an ally, etc.

– Share this blog: URL: https://autloud.ie/how-to-oppose-the-dossiers-on-autistic-children/

Contact AAI

If you want to contact AAI please do so by emailing
 autisticadultsinireland@gmail.com.

Public Representatives Drawing Attention to the Issue

We urge all public representatives to do their part in this fight. We would like to show some of the opposition to the dossiers already raised by public representatives and other public names. This is by no means to centre politiciansAutistic people, parents and carers of Autistic children, and allies of Autistic people are still at the forefront of this. Trying to protect affected families is at the centre of this work. This section is purely to show examples of how Public Representatives can support the opposition to sharing and abuse of sensitive information. This has to be a cross-party issue that needs to be raised in the Dáil and in the Seanad.

Please sign the petition, email your TDs, and share this information today.

UPDATE, 07/04/2021: An earlier version of the blog post included the statement “Fiona Ferris highlighted in an AsIAm webinar about the revelations that there could be up to 400 cases spanning from 1995 to 2005 involving these dossiers.” The post has been edited to remove the time span to reflect that the source of the claim regarding the exact time span is not publicly availabe at this time. We are awaiting clarification regarding the exact time span of cases and will update this post as new information regarding the extent of cases comes to light.

Autistic Adults Ireland (AAI) are a group of Autistic adults formed by our shared outrage about the collection of dossiers on Autistic children and their families by the Departments of Health and Education, as revealed by RTÉ Investigates on 25th March 2021. Please contact us at AutisticAdultsInIreland@gmail.com.

AAI

Autistic Adults Ireland (AAI) are a group of Autistic adults formed by our shared outrage about the collection of dossiers on Autistic children and their families by the Departments of Health and Education, as revealed by RTÉ Investigates on 25th March 2021. Please contact us at AutisticAdultsInIreland@gmail.com.