Just before the conference and AGM of Inclusion Ireland finished, Máirín McCartney, the outgoing chairman, reached for an exquisite piece of blue glass bearing the Inclusion Ireland crest. The location was the Radisson Blu Hotel in Limerick. I was stepping down as director of Inclusion as a result of the rotational rules. Directors must take a break for at least one year after serving six years. I had been there long before the new rules, so I have served over double that time.

To some, it looked like just another piece of glass to put on the mantelpiece, but to me it was much more than that. It was the symbolism of my voluntary work and the work of many of my friends who give their energy and life to an organisation that toils tirelessly for the inclusion of people with intellectual disabilities in everyday life.

Also, I knew that this piece of glass was chosen by Fiona Duignan, Inclusion’s policy and projects manager, and she would have put serious thought into it. This was my friends in Inclusion saying to me: ‘Thank you for many years of service fighting for rights, independence, dignity and equality of people with an intellectual disability’.

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But I deserved no thanks. People with disabilities and their real inclusion in society are part of what I am about. I fell into this community because of my son Diarmuid and as Tom Healy from Co Galway, the incoming chairman, put it: “There is no better community.”

In the last few days, I have thought a lot about serving on the board of directors of Inclusion Ireland. Last week I would have said I’m coming off for a year and I’ll be straight back on next year. But isn’t that just defeating the purpose of rotation and the opportunity to get young, new members involved so as to broaden the knowledge base. I am still serving on enough committees to have my voice heard and I will still have close links with Inclusion Ireland. Wouldn’t it be just grand if people were clamouring for positions on the board and that there was no room for me?

BACK WHERE WE STARTED

As Máirín said nice things about me and my colleagues in Inclusion applauded, I wanted to say something profound but the words didn’t come. Then Fionnuala Garrahy, who was there even longer than I was and stepped down last year, spoke from the audience.

“Katherine, do you remember many years ago when you made an impassioned speech on the need for speech therapy and other services in our special schools?” We chatted to and fro, remembering. Over the years these services have improved dramatically.

“Katherine, it seems we are right back where we started,” said Fionnuala. At this conference we had spent some time discussing the impact of new policy on services. These services were hard won by parents over the years. We also discussed the need for a partnership approach with the HSE. Under the Progressing Services for Children policy, and the move to community-based services for various therapies, it seems that the services of speech therapy, occupational therapy, physiotherapy, psychology and social work for special schools will be diluted.

I fully support equity of service to all children with special needs who need particular interventions, but why has this equity to mean bleeding the service from special schools? The policy is fast becoming ‘progressing services for SOME children ONLY’.

There is a moratorium on employing extra therapists in the HSE and unless that is lifted this equity cannot be put in place. Afterwards, Fionnuala said to me: “You were very calm. I burst into tears last year.”

On the way home I thought about this and recognised I was too distracted to be emotional. I was disappointed with other parents. One woman had made a lengthy contribution on the New Directions’ policy and how day services for people with intellectual disability might be configured in the future. It ran: ‘Inclusion should do this … and Inclusion should do that …’ And she finished by saying: ‘And I’m not one of the Inclusion people but …’

PARTNERSHIP WORKS

Inclusion Ireland represents people with intellectual disabilities on all kinds of levels. It depends on individuals and organisations to pay membership and get involved. It needs people to be participating in the formation of policy and the collective voice.

Paddy Connolly, CEO, and his staff have the expertise to represent families and to advocate for vulnerable people. They cannot be effective without funding. While there is a HSE grant each year, it has been cut too. Individual membership is €40 for the year. It entitles you to lots of valuable information and expert advice at the end of the phone.

It makes sense to take out membership and make Inclusion stronger. More membership means a better voice for people with special needs. Rather than saying ‘Inclusion should’ why not have the attitude ‘Inclusion can’, with the help of your membership and your voice. Then I can move on knowing that Inclusion is in good hands. There is huge work to be done to support families so that people with intellectual disabilities can have better lives.

The Minister of State for Disability, Equality and Mental Health, Kathleen Lynch, TD, addressed the conference, as did Pat Healy, director of social care at the HSE. Both answered questions and listened.

I was disheartened, because the level of frustration that I’m hearing around the country was not portrayed because not enough parents were there. Partnership is the only way forward and it only works when there are active partners.