Protect the children

I have had a problem for years trying to comprehend why families who have children with special needs sometimes get lumped in with the Department of Human Services cases of abuse and neglect. I know situations occur when a child has special needs, but I believe the example given by Karen Westburg [director of DHS’ Bureau of Child and Family Services] is an exception to the rule.

The couples and single parents I have known seem to go the extra mile. Advocacy is a way of life. These parents get on boards, committees, run for public office, attend PET (Pupil Evaluation Team meetings), network with families, attend support groups, join organizations, read and research their child/children’s disorder/disorders, share information with professionals, and attend workshops and conferences. They get involved with the legislative process, go to the media sharing intimate stories not to be in the limelight, but to obtain what their child needs.

I know too many families who are accessing high levels of support only to have their trust broken by a professional who is a mandated reporter and when trust is broken the parent is reluctant and fearful to allow support people into the home. Our homes become semi-treatment facilities with professionals working with our child or children and although the intent is to help it is intrusive.

For years we were asked, “Is your daughter in jeopardy?” and our reply was “no,” we are in jeopardy. Her rages are a part of her autism. If she could control her behaviors she would. Her behaviors created such sadness we believe there was a secondary diagnosis of depression. Sometimes siblings are in jeopardy because of the behaviors of the child with a disorder and when safety is an issue removal of the child with the disability can happen. To remove the child or children without the disability doesn’t make sense.

Behavioral and Developmental Services (formerly DMHMRSAS) is not able to define the words “developmental disability population” because of on going litigation. I wish I could refer to families who have a child with cerebral palsy, spina bifida, acquired brain injury, muscular dystrophy as these families are in need of case management services just as much as the DSM 4 (Diagnostic and Statistical Manual, fourth edition) developmental and mental health disorder clients, however, some families prefer to do their own case management.

We contacted Richard Wexler [executive director of the National Coalition for Child Protection Reform] a few years ago when Maine had received national recognition as being a safe and good place to raise healthy children. We told him that if you have a child with autism it wasn’t a good place to live. We shared some of our horror stories and his reply was we should have saved the postage and used the money to obtain services for our child. Wexler missed the point and it took further information before receiving an appropriate response.

DHS needs to protect abused and neglected children. I value the work of Westburg and Wexler, but please don’t get all our families who have children with special health needs lumped in with the profile of the DHS neglect and abuse clients.

Linda H. Grant lives in Newburgh.