Resources

After meeting with the hospital social worker this week I was blown away by her helpfulness. She is the right person in the right job! She was proactive, helpful and full of information. Miss A has a social worker in her TCCP group but we haven't really been told a lot about what is out there.
Once this person found this out she went out of her way to help. She provided info about what we could access for both girls. It left me frustrated to know that Miss A, nearly 4, had been missing out on so much. We had asked for respite in the past but nothing has been organised yet.
Respite care is organised in differing ways depending on the organisation but it basically gives you money to pay for a Carer for your child. You can then employ the Carer to look after your child while you have time out. We are entitled to respite for each child and you get an allowance per child per year. I would suggest each parent ask about this service as it can be very valuable. For myself if A could get cared for while I take L to therapy it would mean a more successful session and a lot of stress off A and I.

PMH also has a service called Kalparrin. Kalparrin is a great network of people who can also assist in providing information about services available in the community. They have a drop in centre where you can sit in between appointments in a quit space and relax. Their website also provides links to nationwide support sites so take a look even if you're not in WA.

Disability Services: The Disability Services Commission, established in December 1993 under the Disability Services Act 1993 (WA), is the State Government agency responsible for advancing opportunities, community participation and quality of life for people with disabilities.  The Commission provides a range of direct services and support and also funds non-government agencies to provide services to people with disabilities, their families and carers. The WA arm of a nationwide service. You register with them to let them know you have a disabled child. They can provide you with a Local Area Corodinator whose job it is to educate you on what services are available to you. I have been told to be proactive in keeping in contact as they are busy people. They also deal in early intervention programs and respite care.

Ronald McDonald houses are known to a lot of people who need somewhere to stay while their child is in hospital. To stay in the house you just need a child to be in hospital receiving treatment. You don't have to be from the country and your stay can be one day or years. Speak to you social worker or a ward nurse who will put in a referral. We found out that in WA they also have 2 holiday homes. One in Jurien Bay and one in Bunbury. We spoke to our social worker who said we just need to email them and they send you an application form to fill in. As a family who have never holidayed together this means free accommodation for up to a week- so exciting.

Strike a Chord is an organisation that uses the power of music : It was only last year that they changed from a foundation for cancer patients to all sick children. They provide musical instruments, lessons and equipment to ensure music is in the lives of sick children. I will add some more to this list as we go into our next few meetings. If you know of any other organisations please share them!