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Counseling Service Cuts Hit Special Needs Children Hard

New America Media, News Feature, Vivian Po /Video Video: Jacob Simas Posted: Mar 08, 2010

Alameda resident Kyle To is only 11, but he has been battling Attention Deficit Hyperactivity Disorder for years. Now he has been diagnosed with non-verbal learning disabilities and Aspergers syndrome. But To will no longer receive counseling services or a second assessment because the Healthy Families program in California, which provides low-cost insurance for children, has stopped reimbursing those services.

I called every therapist from Oakland to San Leandro, said his mother Emily To. but none of them is willing to accept him.

Other parents with children with special health care needs (CSHCN) are worried that the health coverage for their children will become even more frayed after further service cuts to Californias public health care system were proposed earlier this year.

The problem is not necessarily lack of insurance. Of children with special health care needs, 96.9 percent were insured either through public or private insurance or both in 2005-2006, according to kidsdata.org, a resource website on the health and well-being of Californias children. But 35.7 percent of the children had inadequate insurance coverage.

Health professionals believe the number is even higher today because reimbursements from public health insurance plans are decreasing.

Kyle To does not qualify for Medi-Cal, Californias health insurance program for low-income families, because his father earns slightly more than the eligible income. But they also cannot afford the estimated $300 monthly premiums for private insurance.

Leaving special needs children without adequate coverage is not only risky for them, but it can prove expensive for the government in the long run, said Juno Duenas, director of Support for Families of Children with Disabilities (SFCD). They can end up in emergency rooms, which is much more expensive, said Duenas.

SFCD is a parent-run nonprofit organization in San Francisco, providing families of children with special needs with information, resources and support to make informed choices for their children.

As a long time service provider in the field and the parent of a 25-year-old daughter with an underdeveloped brain, Duenas sees the problem as being about much more than the current round of budget cuts.

For instance, Deborah Lynn Dalton, 50, an African-American parent who mentors at SFCD, has been fighting Medi-Cal for additional speech therapy services for her son, Gregory Walter, for almost a decade.

Gregory, 16, is a student at Balboa High School with Down syndrome and severe speech impairment. Until he was 8, Gregory was covered by private insurance through Daltons job and getting additional speech therapy sessions without any extra charge. Dalton said that those speech therapy sessions, along with those provided by the school district, helped Gregory make great progress. He received compliments from his teachers, and there was no stuttering, said Dalton.

However, in 2001, Gregory was diagnosed with a life-threatening condition, and the doctor gave him only six months to live. Dalton quit her job as a quality assurance analyst to take care of Gregory full time. Fortunately, Gregory survived, but since then, the two have had to rely on Supplemental Security Income (SSI) and Medi-Cal.

Then Dalton found out that Medi-Cal would not cover speech therapy since the school districts were already providing it in their special education programs.

Currently, the San Francisco Unified School District is offering Gregory 270 minutes of speech therapy per month, which breaks down to 90 minutes a week, three weeks a month. Earlier, Gregory had received twice as much additional speech therapy through Daltons insurance.

Now, Gregory is showing regression in his speech. He even stuttered his name as he introduced himself to new friends at the Kezar Stadium, where the San Francisco Track and Field Team for the Special Olympics practice every Saturday morning. Gregory has been on the team since he was 7 years old.

The teams head coach, Cynthia Jones, who has trained Gregory for nearly 10 years, has seen the difference.

I do notice that he doesnt talk as much, said Jones. She said she was having difficulties understanding him and is convinced that he could make better progress athletically if his speech improved.

His mother is frustrated. Sometimes with Medi-Cal, you feel like a second-class citizen, said Dalton. She also tried to get Gregorys hearing tested but could not afford the $350 cost. Dalton said her only hope would be continue to lobby the school district on Gregorys behalf.

Recently four Chinese immigrant parents with autistic children gathered at a parent support group in San Franciscos Chinatown Children Development Center (CCDC) to express concerns about the counseling needs of their children. They hoped Medi-Cal would resume mental health services for autistic children at community clinics, where bilingual services are often provided.

Nancy Lim Yee, executive director of CCDC, said her organization used to provide counseling and psychotherapy to autistic children. But these services were dropped eight years ago because Medi-Cal would not reimburse them unless the children were also diagnosed with mental health problems or pervasive developmental disorders.

But Yee said that kind of dual diagnosis is rare among autistic kids because it is hard to differentiate between mental health issues and attention deficit disorders associated with autism.

For instance, Amy Szeto, a clinical social worker at Oaklands Asian Community Mental Health Services (ACMHS), said many high functioning autistic children are actually suffering from depression because they understand the world enough to realize they are treated differently. ACMHS partners with the East Bay Regional Center to provide mental health services to families with Asian language needs.

However, since they are not qualified for mental health services at the clinic, Szeto said these kids only receive psychiatric medication, but not counseling.

Tam, one of the parents with the focus group, said her 12-year-old autistic daughter attended the counseling sessions twice a few years ago. Even though her daughter was not diagnosed with mental issues, she considers the sessions highly beneficial.

During the first session, she was asked to draw a cat and she did, it was the first time I knew she could draw a cat, said Tam excitedly. Tam said it was one of the few times she saw her daughter interact with others positively instead of just isolating herself in a room.

Apart from public health insurance plans, private insurance plans also have gaps.

Krystal Moreno Lee, 33, is a single Latino mother whose 8-year-old daughter, Jordan, with mild cerebral palsy and epilepsy, is privately insured through Lees employment.

Jordan had her first brain surgery when she was 4 months old. But her mother worries that if she needs a second surgery soon, Lee might not be able to afford it even though Jordan has insurance.

In addition, co-payments are steadily rising.

Lee said since 2009, the co-payment on Jordans individual doctor visits had increased from $15 to $25. So with Jordans monthly visits to the primary care physician, physical therapist, occupational therapist and pediatric neurologist, those co-payments could easily total about $200 a month, and that does not include an additional $100 for medications.

It is a burden for a single parent on limited income, said Lee. She remembers that when Jordan was born many services were still available.

Lee is grateful that adequate health services were offered to Jordan at an early age. Her daughter is now studying in a mainstream classroom. But as a health policy associate who works at a nonprofit childrens group, she knows there are many children who are less fortunate.

When Jordan was born, I was told she would not be able to talk or walk, said Lee. But with the support, she made tremendous progress. 

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