Nancy Cornelius was at her wit's end. She no longer knew how to help her daughter, Amy, who was born with CHARGE Association, a pattern of birth defects affecting vision, hearing, growth and the heart. When the condition led to behavioral problems that special education teachers could no longer handle, Cornelius almost lost hope. For the first time, she considered placing her 17-year-old daughter in a special needs facility.
Cornelius is not alone. Just in San Diego County, more than 6,000 new families each year are confronted with the challenge of caring for a child with a disability. Many become lost in a maze of bureaucratic agencies, red tape and paperwork. Most don't receive or even know about the range of information and services available to help them deal with the needs of their child. Even if they did, trying to access those services often is a frustrating and time-consuming task.
Wouldn't it be great, then, if there was a one-stop shop where parents could find out about and make contact with organizations designed to help them with issues of education, health care, counseling and treatment?
That's the question posed by Moises Baron, director of USD's counseling center. As a pediatric psychologist, Baron saw countless families face the daunting task of figuring out how to help children with special needs. Some faced mental or physical disabilities such as autism, cerebral palsy and Down syndrome. Others dealt with physical disabilities or chronic illnesses like cancer or diabetes. And many tackled emotional impairments or learning disabilities such as Attention Deficit Disorder. All were desperate for help.
"What these conditions have in common is they impact the child's ability to function," says Baron. "I felt we had the resources at USD to bring together something of great value to these families."
Baron's solution is the Center for Families of Children with Special Needs, a unique collaboration among USD's professional schools and community agencies that provides a single entry point for families to identify and access the resources they need to cope with and adapt to their child's needs. Baron began designing the center three years ago, and today it encompasses programs from the schools of education, law and nursing.
"The center is congruent with USD's mission of service to the community; it mobilizes our professional schools to help with counseling, legal advocacy and health services," Baron says. "USD is coming together as an organization to serve families, and at the same time is training professionals in education, law and health care."
The center is allied with the Exceptional Family Resource Center, a network of five offices in San Diego and Imperial counties. The EFRC fields close to 13,000 inquiries a year, many of which now are funneled to USD, where professors and students take on the cases. The nursing school's pediatric nurse practitioner program offers health consultations, interns from the School of Education 's marriage and family therapy program provide family counseling, and the law school's new Special Education Legal Clinic, created specifically to be a part of the center, offers legal advocacy and consultation.
"To our knowledge, no other university-based center is as comprehensive as this one," Baron says. "Families now have a place they can call and be referred to the right service, and that service will be provided effectively." Nancy Cornelius, for example, was referred to the legal clinic. Students there worked with school officials to find an appropriate placement for her daughter, who now is in a private program and still lives at home.
The legal clinic, which opened a year ago, was the first program within the Center for Families of Children with Special Needs to go live. The clinic, which students take as a for-credit class, offers services ranging from simple "counsel and advise" sessions all the way through legal representation at hearings. The most common cases at the clinic, says family lawyer and clinic supervisor Margaret Dalton, involve school districts that don't recognize a child as having a disability that qualifies them for special education.
"The goal is to keep these kids in school," says Dalton , who several days each month takes students to consult with families at the EFRC. "It's not just a matter of a family's legal rights, this is a matter of their lives."
Her sentiments are echoed by Baron, who says caring for a child with special needs can exact a heavy emotional, physical and financial toll on families. He hopes to add a full-time director to the center, and to permanently endow its programs.
"We don't want to replicate services already offered in the community, we want to identify the gaps and work to fill them," Baron says. "The center serves family needs created by the disability, because we want these families to function as best as possible."
Nancy Cornelius was at her wit's end. She no longer knew how to help her daughter, Amy, who was born with CHARGE Association, a pattern of birth defects affecting vision, hearing, growth and the heart. When the condition led to behavioral problems that special education teachers could no longer handle, Cornelius almost lost hope. For the first time, she considered placing her 17-year-old daughter in a special needs facility.
