Kathryn lives in a semi-rural area with native bush and gardens surrounding the house. "It's a very peaceful environment with native birds in abundance."

There's me, my husband Greg, son Thomas, one dog, two cats, two budgies, Colin the guinea pig, the girls (six chooks), and fish in the pond. My other two girls, Jessica who is 21 and Rachel who is 18, are living and working or training in the South Island. You can guess I'm known for my sense of humour.

"We decided there needed to be some sort of support group for families like us and this was the beginning of the Northland Down Syndrome Support Group. I am passionate about this support group as I would not like to see another family go through what we went through without any support in place."

Thomas, who is now 14, has Down syndrome and was also born with a serious heart condition. Until this was fixed when he was two-and-a-half we focused on keeping him alive. My husband and I became his nurses as he was tube fed and this took five to six hours a day. We coped on the outside! But we lived day to day.

I have been the coordinator of the group for about five years and the office is my house. While we call ourselves a Down Syndrome Support Group we have an open door policy and welcome anyone wanting to join for support.

When you have just had a baby and a medical expert tells you that you have had a Down syndrome baby, it's overwhelming. There is some denial, some grief and then a need for some real information about living with Down syndrome. This is what we can share with new families.

"As a group we share our ups and our downs, as we care for disabled family members, our frustrations with service providers, our breakthroughs and our successes with service providers. It's a place where you can both laugh and cry about our situations and so some of the stress is vented. We take good care of each other and, for most of us, we find special friends amongst the group."

I've a great mate that I first met through the group and we talk every day.

Through our newsletters and our meetings we communicate information. Sometimes it's very hard to find out what we are entitled to or how to get access to services or carers that will work for us, so we share information. We have strong links with NZDSA, the New Zealand Down Syndrome Association, and we go to all their conferences if we can. We have a joint Christmas party with Parent to Parent families, and run events in the community. We network with other organisations and work to hold events and social events so our members from throughout the far north can take part.

Thomas has been mainstreamed throughout his life but it hasn't always been easy. The transition from a small primary school to a large high school has put the stress levels up, but knowing the special education system helps. I am on the Special Education Parent Reference group. The problems Thomas faced were bullying - students and teachers looking at the label first, not the person, and focusing on what he can't do rather than on what his abilities are.

Thomas does work experience at the Bait N Tackle shop. This is such a positive experience; he is out there in the community working with people. His tasks are packing bait, counting hooks, writing price tags, talking to the customers and he loves it, even if we have to put up with the smelly bait plastered down his clothes.

My impairment is rheumatoid arthritis. I take medication for the pain. I often find simple tasks that people take for granted hard to do, for example like cleaning teeth, brushing hair, doing up buttons etc.

I suffer from tiredness and fatigue so I need to manage work and rest times. I am on the Mainstream supported employment programme through Workbridge. I work for Work and Income as a Disability Support Manager, providing information and support on what's out there in the community from health and disability providers, community organisations and support groups, leisure and sports group etc. This is a joint venture between Work and Income Whangarei and the Tai Tokerau DEAS Trust. It's a part-time position from 10am to 2pm. It's a fairly new position and I love it. It's about meeting people, talking with them about an issue or need and working with them to find a way forward that they will take. There is no sense of "doing it for them" - I'm not into that. Seeing people achieve something themselves gives me great pleasure.

My own condition is a bit unpredictable. It's hard because others don't see or know this. Sometimes what I did one day is just impossible the next, yet people expect me to do it every day.

"Managing an unpredictable disability means you need to be on top of the emotional side of this or it can be a roller coaster ride, crashes and highs."

In a bad pain patch my self-esteem and my tolerance for others can go down. Sometimes, for me, a bit of solitary time is needed, which is not always easy with a son with other needs. The trouble is, when it's good I want to push it - socialise, play cards, have a laugh, do my artwork, sewing and beading and lead a very full life - so it's sometimes hard to get the balance right.

I would like to study, maybe a social work degree, but I would need to use tertiary disability support including, probably, a writer for exams. I do have hand supports and use a computer but not at speed or for long periods. We are modifying our bathroom and had an occupational therapist complete an assessment of my needs, but it's going to be a while before there is any action on that, so we have begun ourselves. It would be great for me if I had access to a car modified for me to use - sometimes I just can't drive and then I'm reliant on my husband. When I do drive, accessible parking can be an issue. I have a mobility permit but too often there are people with no permits who park in the parks.

Some of these things money could buy if the financial situation was a bit different. I am hoping to be completely off the Invalid's Benefit and working full-time.

It would help if there was more care in place for my son, to enable my husband to get more regular employment, as his role is often that of carer. He is self-employed so is able to be flexible in the care he provides for Thomas. Costs of specialist visits for my husband and I, and medication, are significant for us. More spare cash to let us go to the movies or out to dinner once in while would be great; however there are great things we do as a family - like fishing.

"I believe one purpose of the Disability Strategy is to give value to the lives of people with disabilities and their families as well as to educate in removing the barriers to an inclusive society."

We do access some services. I have someone who cleans the house once a week. Thomas is very much part of an IHC shared care family and he stays with them six to eight hours a week. We get some carer support days. Now Thomas is a teenager a real gap is obvious that we are looking to meet, perhaps through our support group. There is no local teenage activity group that Thomas can have fun with and develop a full range of social relationships.

My job is new this year and there is a bit for me to get my head around - what I can and can't do with my variable health - but in the future I would like to be financially secure, have a balance between home and work and to be working full-time in a supportive workplace that recognises all my needs.

I can see that since the Disability Strategy has been in place there is some evidence of organisations recognising the need to work together, and beginning to find practical ways to do so. My job could be seen as a small way to put disabled people with an identified need in touch with, mainly, available mainstream and community services and, in some situations, services specifically for the disabled.