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Early support

“I just wanted to be a mum…before I had to be a therapist…be a coordinator… I had to schedule ‘mum’.  We wanted family time, mum & dad as a family… we have a happy family goal”. (A mother involved in our Early Support pilot in Northland)

In our list of strategic priorities that drive our organisation’s work, the number one spot goes to children and families. The Policy and Advocacy team talks about the importance of early support and asks for your views.

We provide a wide range of services to children and families from supported lifestyles to early intervention services. Our staff members work hard to strengthen families and give children with disabilities the support they need to thrive in the community. One major issue we find, however, is that often families don’t arrive at our services until a few years after a diagnosis.

Generally, the only support available in the first few years is medical treatment and therapies. While this support is very useful, it often does not allay the anxieties and concerns of the family. By the time parents reach services like ours, they have sometimes been bombarded with negative messages about their child’s limitations, not their potential. When your child is diagnosed with an impairment, it can often be a confusing and deeply unsettling time. Many parents have little prior knowledge of disability and are unsure what to expect.

Parents are often left having to co-ordinate multiple services. Some of these services are not designed to assess and manage children with disabilities. Sometimes, the professionals they work with are uncomfortable working with children with disabilities due to a lack of training and knowledge. Parents often do a great job, but can be pushed to breaking point and sometimes feel that there is no other option than residential care or out of home placements for their child.

Children as young as preschool age have been placed in residential care because families feel unable to cope because of a lack of support.

The first few years of a child’s life are critical. This is especially true for children with disabilities and their families. Good early support can make a real difference for families.

Early support services have strong formal links to other services and medical professionals. This enables services to get involved with a family from the very start.  A dedicated coordinator works alongside the family to support the vision they hold for their child and family. The coordinator will help the family to organise all the services and support available for their child. The coordinator will also develop the family’s ability to speak up for their child to ensure their child gets the best possible support. The aim is to empower families, reduce their stress and put them in control of their lives and the future.

One of the parents involved in our pilot in Northland said this about early support:

“Meetings and appointments were separate and took up the whole week; agency partners weren’t always aware of who was involved it was a real eye-opener.  Now we have meetings in 2 days and the rest of the week is ours”.

The benefits of early support for children are widely recognised, most recently in the Green Paper for Vulnerable Children. It was also noted in the Social Services Select Committee Inquiry into the quality of care and service provision for disabled people in 2008. England has also recognised the value of early support. England now has a national early support programme for children with disabilities.

Early support gives families the skills and confidence to take control of their lives, reducing the risk of residential care, or out of home placements

We have run a number of very successful early support pilots. Unfortunately, despite being very successful, none of the pilots were able to secure on-going funding. Partly, this is because of a lack of awareness by the public and politicians of the unique challenges and barriers families of young children with disabilities face, especially in the early years.

While our services have evolved since the pilots, there is still a definite need to get in early and provide support, information and assistance. Families still need help with dealing with the many organisations in their lives. We have been able to get people earlier access to our services through good positive relationships with other organisations, especially medical professionals. This still relies on personal relationships, however, rather than the formal structure of an early support service. Children will still be slipping through cracks. We do not think this is good enough.

We need to get families thinking about the future from the very beginning and to have dreams and aspirations for their child.

The question is how best to get families good early support. Does there need to be a national early support programme like in England? Does an early support programme need to have automatic referrals, similar to how Plunket and Well Child work? Do organisations like ours just need more formal links with other organisations as well as easier to access and better resourced existing services, such as Supported Lifestyles?

Let us know what you think in the comments below.

We are going to talk more about early support in the coming weeks.

Policy and Advocacy Team