Helping a Family Provide the Best Care for their Child at Home

4-year-old Johnny was born with CHARGE syndrome, a rare genetic disorder with multiple physical, sensory, and behavioral anomalies. He has heart issues, can only communicate non-verbally, and is expected to experience deafness as he grows older. Despite his health issues, he has a great support system which includes his family, and Partners’ Home and Community Based Alternative (HCBA) Waiver program’s care management team. HCBA provides Johnny’s family with care management services that will sustain his health and safety outside of an institution. A Partners’ social worker helped the family apply for In-Home Supportive Services (IHSS), which allows a parent to receive compensation for providing care for Johnny’s complex health issues at home. They also received assistance through Partners’ Urgent Needs Fund that provided Johnny and his family with essentials to support in-home care. Johnny’s family is grateful for the support provided through Partners’ HCBA program. Aside from his mandatory medical appointments, Johnny has had no need to visit the hospital. He has been showing improvement at home, which allowed his family to feel comfortable about him attending preschool this year.

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