Magazine article The Exceptional Parent

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Healthcare Needs: The Journey to Adulthood

Magazine article The Exceptional Parent

One Family's Journey: Medical Home and the Network of Supports It Offers Children and Youth with Special Healthcare Needs: The Journey to Adulthood

Article excerpt

In this nine installment Medical Home series, EP has presented a case study about the American Academy of Pediatrics' Medical Home Initiative. A "Medical Home" is not a building. It is an approach to providing healthcare services to children with special healthcare needs.

This article presents Part Nine and the final installment in the series in which readers have learned more about Amita and Samir and their daughter, Anjali, a fictional family.

Anjali sat sipping coffee, doodling with a crayon. It wasn't her coffee. She didn't drink coffee anymore. She had switched to decaf tea since becoming pregnant. But her husband, Tarkesh, drank two cups of coffee every morning. He had taken their six-year-old son, Deepak, to school a few minutes ago and had left a small bit of coffee in his mug. She liked to finish his coffee, just a taste before she went to work.

Anjali stood up, gathered the crayons from the table and headed toward her home office. She worked part-time as a copy editor for an advertising agency. Two days a week she went into the main office, and one day a week she telecommuted from home. On the days she did not work, she usually went swimming, a passion she had developed when she was a teenage camp counselor years ago. Because of her cerebral palsy and her asthma, she still had a lot of doctors' and therapy appointments that took up her days off. She also was finally learning to drive.

When Anjali was a teenager, she desperately wanted to drive and not just for the independence; she wanted a license because all her friends were driving. It was a rite of passage. Because of her cerebral palsy, her legs were weak, and her hands were strong. The car she would drive needed to be equipped with hand controls that allowed her to control the gas and brake and to shift gears. Her parents couldn't afford to have hand controls installed in the family car. Learning to drive moved to the back burner as she went to college and settled into the university town for work after graduation. Para transit and friends met Anjali's transportation needs. Then, last year, when Anjali was 29 years old, she was leaving her local YWCA swimming pool and saw a sign on a community bulletin board about driving classes. The footnote mentioned classes for people with disabilities sponsored by the Center for Independent Living (CIL). It also listed contact information for the state Office of Vocational Rehabilitation (OVR). Anjali took down the information. She knew her state had an assistive technology program, which provided low cost loans to residents with disabilities. She had applied for one while she was in college to buy a laptop so she could access the Internet from her dorm room on days when the weather was too harsh or the sidewalks were too slippery or for days when she needed to go to the library to log-on. She considered applying for another low-interest loan for the car. But, she would also contact the OVR for more information. One year later, the car--with help from her state OVR--was equipped with hand controls, and she was halfway through the CIL drivers' education class.

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Anjali walked down the hall to her home office and sat at her desk. She checked her email Inbox. There was an email from her sister, Vashti, who was now teaching at an elementary school for children with special healthcare needs in New Delhi, India. The name of the school was "Muskaan," which means smile. Vashti's students had created some cards, and she was sending them to Anjali to distribute to her friends who then bought these cards. The money went back to India to help support the school. Anjali also had a message from Paige, her best friend for over 15 years, confirming their plans to meet at the park on Wednesday after school with their children. She and Paige had both gone to their state university and had stayed in town to start their careers after graduation. The last email was from her boss, confirming the production schedule for their current project. …

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