FREEDOM OF INFORMATION AND PEOPLE WITH DISABILITIES

Controversial changes were recently made to the Freedom of Information Act. Following these changes, Eithne Fitzgerald, the architect of the original Act, assesses what Freedom of Information means in practical terms for people with disabilities and their families.

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Recent changes to the Freedom of Information Act have narrrowed significantly what we can learn about current policy, but have widened the rights of parents to act on behalf of their children with disabilities.

Freedom of information gives citizens the right to see the files held by public bodies, including designated publicly-funded agencies such as St Michael’s House, Western Care and Cheeverstown House. Different rules apply to requests for personal information and for non-personal information such as policy documents or accounts.

The right to see policy information only covers documents created since April 1998, but people are entitled to see personal information about themselves held on public file, whenever the file was created. A proposal which would have restricted the rights of individuals to see records relating to themselves, as distinct from records where they were specifically named, was dropped from the recent Amendment Bill. This was after strong opposition from victims of institutional child abuse, who had used the Freedom of Information Act to find out about the circumstances of their childhoods.

The law specifically says people with disabilities should be helped to get access to information. Each organisation is supposed to designated an official who will help people with a disability who are looking for information. For example, where someone has a reading difficulty, arrangements can be made to read out a document or to put it on tape.

In general, only the person concerned is allowed to see personal information about themselves. But in the case of a child or someone with a disability which would restrict their capacity to understand the papers, the records may be given to a parent or carer acting on their behalf. So parents can be entitled to see records of their child’s progress, of the care regime, and records of incidents involving their child. It is good practice to give out this information to parents in any event, but having a legal right to information is a strong guarantee that good practice is actually followed.

There is not an absolute right of parents to see their child’s records. The underlying principle is, would release of information to a parent or carer be in the individual’s best interests. For example, release of medical records could help parents make a more informed decision about seeking treatment. If the information is of a particularly private and sensitive nature, then the parent may not be given access. The child’s views may be sought where appropriate.

The recent Act extends the rights of parents to act on their children’s behalf in seeking to correct an inaccurate or misleading document on their child’s file, or to seek reasons for decisions affecting their child. Regulations will be made to give effect to these changes, presumably in line with the existing provisions for parents and carers to act on someone’s behalf. So if a child is on a waiting list for a service, parents can find out where the child is on the list, and see on what basis the list has been ordered. Parents can ask to see a child’s entry on the Intellectual Disability Database, can ask for reasons for placement in a particular service category, and can ask to have the assessment of service needs amended.

Under the Freedom of Information Act, the criteria, rules and guidelines for any service must be made public. If the rules are not published, or are inaccurate, they cannot be applied to the detriment of the individual. This is a powerful guarantee of fair procedures and use of consistent criteria to make decisions.

While the rights of the individual to personal information are retained, the amending Act has significantly watered down the right to get information on public policy. The right to see policy files is a particularly important one for parents and campaigning organisations like NAMHI.

We will still be able to get factual and statistical information, accounts and expert reports. It will be possible to see policy papers, minutes and submissions after the policy decision to which they relate has been taken. But access to papers about ongoing policy issues has been tightened up, where the deliberative process is still ongoing. And as funding for intellectual disability is an issue that is always on the table, it is hard to say that the deliberative process is ever concluded.

There may be a right to see policy drafts or discussion papers if the public interest in release outweighs the value of allowing policy discussions take place behind closed doors. Up to now, one could appeal a decision to refuse information on these grounds if it was felt that the organisation concerned had put too much weight on the merits of secrecy compared to the value of open discussion. But if a secretary general of the government department certifies that policy discussions are still ongoing, the right to appeal the refusal of this information has been taken away.

We thought we were going to see how the government decided funding policy five years ago, with the planned release of five-year-old Cabinet papers. However, release of these papers has now been delayed until ten years has elapsed—and for good measure, ministerial correspondence and papers of subcommittees of officials reporting to Cabinet are also out of bounds for ten years. Up to now, the exemption for Cabinet documents only applied to the very specific memoranda for government and papers prepared exclusively for Cabinet, now other documents if sent to Cabinet can also come under the ten- year delay.

The European Social Fund has been an important source of money for services for intellectual disability, particularly in the area of training and sheltered workshops. We will no longer be entitled to see papers relating to government negotiations with the EU on these issues, even when the negotiations have been concluded, because of an absolute ban relating to such EU papers inserted in the recent amendment Act.

Parliamentary questions are a useful mechanism to ensure accountability and keep governments and officials on their toes. Up to now, if a question was not reached in the Dáil, it was still open to organisations to ask for the briefing papers for the Minister’s reply. These papers will now also be off limits.

So while there will still be access to general files, these new restrictions will dilute the public’s right to know. They offer more loopholes for any reluctant public body to hide material it does not want the public to see.

There are plans for automatic charges for requests for information. This may be a deterrent to cash-strapped voluntary bodies and parents’ groups who exercise an important oversight on public policy and practice.

Freedom of Information has brought a welcome change in the culture of organisations. More information is being put up on websites or given out on request, because it is backed by a legal right to information. Because policy papers will come out after the event, they are more likely to carefully examine the pros and cons of any proposal. I am concerned that the changes in the law will lead to a more grudging attitude towards release of information and a dilution of the culture of openness.

In the Special Olympics this summer, we will celebrate ability. But the reality remains that many people with a learning disability cannot fight effectively for themselves and depend on public policy, on professionals and care centres. Promoting openness is the best guarantee that policy and practice genuinely responds to their real needs.

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