Zainab has autoimmune encephalitis . That means her body attacks her own brain .
Zainab did physical therapy after she got sick . She learned how to ice skate and ride her bike again .
Her mom said :
“ She still can ’ t write her name . She ’ s lost all those cognitive skills . Those have never come back .”
Zainab needs somewhere safe to live . Her parents worry about what will happen when they die .
They bought a house for Zainab . It is close to their house . They wanted Zainab to have a roommate . But Zainab did not get a roommate . Zainab might hurt someone else who lives with her .
Zainab Edwards skates while holding hands with her teacher Tammy Jimenez at the Ice Den , Chandler , Arizona . ( Rick D ’ Elia )
Many people have disabilities like Zainab . These disabilities are called intellectual and developmental disabilities or IDD . People like Zainab are sometimes called people with complex needs . That means they need a lot of support . Sometimes it means they hurt themselves or other people .
Here are the ways people with IDD get support services :
• They or their families pay for services .
• Their families are their caregivers .
• A state agency pays for services .
Only 1 in 5 people with IDD get paid services from their state .
Most people with IDD do not get any help paying for services .
Some people with IDD wait for a long time to get help from their state .
Zainab gets services paid for by the state of Arizona . Arizona pays more than $ 1 million a year to support Zainab .
But Zainab ’ s family says her life is not good .
Having money to pay for services is not the same as having good services .
People do not agree on the best ways to support people like Zainab .
Zainab has many staff . She has :
• Two caregivers who stay with her all the time .
• A nurse who stays with her all the time .
• A sign language interpreter for the nurse .
• Another caregiver who stays with her during the day .
• A behavior coach .
• A sign language interpreter for the behavior coach .
Arizona pays for Zainab ’ s staff . Arizona also pays for most of her medical costs and transportation .
But all of these services do not make Zainab ’ s life safe , happy , or productive .
Zainab ’ s mom Cynthia says that Zainab gets new staff a lot . She said they do not have the right training .
Cynthia spends a lot of time caring for Zainab herself .
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