I love my job. I ride around and see the insides of peopleâ€™s houses and hear their stories. For a writer it doesnâ€™t get any better.
Iâ€™m thinking today about a mother and daughter I visited in Providence. I was there to supervise a nurseâ€™s aid who was giving care to the daughter.
The daughter was in her thirties, a petite, quiet, severely mentally disabled woman. It wasnâ€™t Down syndrome. I never found out what caused the disability, but the young woman would never be able to live without help. She needed to be fed, dressed, played with and constantly watched. She was like a two year old child, although stronger and more mobile. She occasionally had seizures, fortunately not often. She would have fits of temper, but with gentleness she could be calmed.
The house fascinated me. It seemed that nothing had been changed since President Kennedy. Maybe nothing had been changed since the mother began her life of devotion to a baby who would need her every day for as long as she could give.
If this little family had any money, it was not apparent. There was nothing new in the house anywhere. The mother was cheerful and uncomplaining, focusing on what was going well. No emergency room visits for months, no seizures or colds. She had nothing but praise for the kind nurseâ€™s aid who cared for her daughter.
What does it take to support a special needs child in barest poverty? My agency sent a nurseâ€™s aid to give the mother a few hours of respite. The daughter was enrolled in a day program from morning till afternoon on weekdays. Given her condition she would have been on Medicaid and SSI Disability to cover her medical expenses and prescription drugs.
Hillary Clinton was attacked for saying that it takes a village to raise a child, but itâ€™s a fact that no one can give this level of care without help. In a run-down apartment in a poor section of town a mother depends on social programs just to survive.
I have visited other families where a mother, or both parents, devote their lives to the care of a disabled child. It doesnâ€™t get easier as parents age and childrenâ€™s needs increase.
I was listening to WRNI today, a conservative economist was talking about cutting government spending, specifically Medicaid and Medicare. Our governor has cut childrenâ€™s health care. The Republican candidate promises not to raise taxes.
At the same time, the religious right are exuberant about the â€˜culture of lifeâ€™. They say that Sarah Palin â€˜walks the walkâ€™. Will she, or any of her party stand up and defend the programs that make life possible for children with special needs? Will they defend those programs against demagogues and short-sighted tax-cutters? Will they even give domestic needs the same respect they give the military?
If the Republican vice-presidential candidate is truly a maverick she has her chance to speak up now.