Stories about parent with intellectual disability

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Parents With Intellectual Disability in Care Proceedings

Note- The cases studies are based on actual cases; while the families involved have given consent for their stories to be used, some identifying details have been changed.

We are Family Video

In this Youtube video, three families where one or both parents have intellectual disability share what parenthood and family life means for them.

Article 23 of the United Nations Convention on the Rights of People with Disabilities states that States parties shall take effective and appropriate measures to eliminate discrimination against persons with disabilities in all matters relating to marriage, family, parenthood….and shall render appropriate assistance to persons with disabilities in the performance of their child rearing responsibilities.

Moreover the United Nations Convention on the Rights of the Child states Children have a right to be raised by their parents (Article 7)….Governments should respect the rights of families to raise their children as they grow up (Article 5 )

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Lila and her first child

Lila was pregnant with her first child. She has a history of mental health problems and intellectual disability. She had a good history of engaging with support services. Her disability and mental health workers had been trying to get assistance from Community Services well before the birth. They felt Community Services were blocking referrals to support services to assist Lila with the baby. Community Services seemed to think there was no point making referrals as they were going to court to have the baby removed when it was born.

Lila’s mental health worker called IDRS. The IDRS solicitor wrote to Community Services reminding them of their obligations under the legislation and invited Community Services to contact IDRS to discuss concerns they had about Lila’s ability to parent or Lila’s parenting support needs. Community Services responded positively admitting they did not know much about intellectual disability and invited training for their officers.

Lila went home from hospital with her baby. No court application was filed and Community Services helped line up support services.

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A Change of Plan – Give Them a Chance

Matt and Wendy both have intellectual disability. They have been in a stable and loving relationship for 8 years. They decided to start a family. Matt’s parents were supportive of their decision and willing to lend a hand as they lived nearby.

During the pregnancy their baby boy, “Toby” was found to have a significant congenital abnormality. They were given the option to terminate the pregnancy. They chose not to. When Toby was born he required immediate and subsequent surgery. Matt and Wendy were constantly by his side willing him to live. Matt and Wendy worked as a team. They readily took advice from nursing and medical staff and put into practice what they were taught so as to care for Toby.

After 6 weeks sitting by their son’s crib day and night, they were visited by Community Services. A report had been made questioning Matt and Wendy’s capacity to care for Toby and Community Services were planning to assume care of Toby.

IDRS was contacted. Margaret Spencer visited the couple to discuss their rights as well as to explore what support they may need. With the parent’s permission, she spoke with all stakeholders, allayed fears, corrected assumptions and encouraged them to think positively and laterally about supporting the family.

Community Services agreed to give Matt and Wendy “a chance”. A staged transition was planned from hospital to home via a short stay with Matt’s parents.

After a few months with Matt’s parents, Matt and Wendy decided to return home with Toby. Matt’s parents supported this move confident that Matt and Wendy were attentive to Toby’s needs. Community Service rejected this proposal stating they would start care proceedings if Matt and Wendy left the paternal grandparents’ residence. Matt’s mother contacted IDRS again. Margaret Spencer met with Matt and Wendy, health professionals and community workers involved with the family and managers and caseworkers at the local Community Services Centre. Once again she allayed fears and encouraged them to think positively and laterally about supporting the family.

Soon after Matt, Wendy and Toby went back to live in their own home. Toby has had some medical emergencies unrelated to his care and these were handled promptly and appropriately by his parents.

When Toby was 7 months old, a case conference was called by Community Services. The family asked Margaret Spencer to attend. Margaret advocated that the family’s Child Protection file be closed and the family be treated like any other family caring for a child with special needs. This proposal was agreed upon by all in attendance. Matt and Wendy and Toby are no longer clients of Community Services and doing well.

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