Stop Government Abuse of Disabled Children in California

We the undersigned, having been apprised of the governmental abuse of disabled children in California by the Departments of Health Care Services, Developmental Services and Education, and the fact that these bureaucrats routinely implement policies, procedures and guidelines to circumvent the statutes with the intent of resticting access to services by these children, seek the following: 

Oversite Committee:  Establish an oversite committee in each County made up of a Compliance Attorney, 5 parents, and one representative each from CCS, Regional Center, and the School District, as well as a representative from the Insurance Commissioner's Office.  Require that all new policies, guidelines, and regulations that an agency wants to implement be first reviewed by this oversite committee, with a key analysis being "does this narrow or broaden the statute?"  This alone would eliminate much of what is going on right now, that is, the agency effectively electing itself as the majority vote of the legislature, thereby circumventing the statute and the voters of this state by their implementation of policies that go against the statutes. 

Dispute Resolution:  This same oversite committee reviews all parent/consumer complaints filed BEFORE an agency has any access to legal representation.  If it is determined that the agency is acting in compliance with the statute, and the spirit of the legislative intent, then, and only then, will the agency be given access to attorneys.  The parent has the right to have ALL THREE AGENCIES, i.e., CCS, Regional Center, and the School District, as well as any private pay insurers and MediCal/CalOptima, at the table at the same time, with the potential of all of these defendants being named in the same complaint and heard in the same administrative law proceeding at the same time.  Further, since these issues involve medically necessary, and academic issues, time is of the essence, and all hearing should thus be had on an expedited basis, with a required mediation before the hearing.  Any continuances that are requested should be rescheduled on an expedited basis as well.  Administrative law judges should be hired from a pool made up equally of parents and child advocates as well as the attorneys who work for the government and prosecute these cases.  The judge pool will be made up equally of attorneys who are parents of disabled children and child advocates, those government employees promoted up from prosecuting these cases, and other attorneys who have no prior connection to these issues so as to assure, as much as possible, a nonbiased 'judiciary'.  (Right now, the prosecutors of the Legal Staff Office get promoted to ALJs, and in the case of CCS, these 'judges' work for the same governmental agency that the parents are going up against, so you get a very biased "judiciary".)  NEVER should a hearing be before the same department as that which houses the agency that the parent is going against, in this case, the Department of Health Care Services.  This creates an unconsitutional bias which is so apparent, it's hard to believe it was ever set up this way in the first place, except with the intent to eliminate all parent recourse.  Reform of the dispute resolution process would save millions and millions of dollars each year in attorneys' fees and litigation costs which could be spent instead on getting these children well.

Assessments:  Have these children assessed ONCE a year, not assessed by each agency separately.  This is such a waste of time and money, and parents do not have time to be bringing their children to duplicative appointments.  We are already so busy with trying to meet out children's needs.  For the most part, the medical portion of the assessment should be done once a year by the child's doctor(s), the therapy assessment done by the child's therapists, and the educational assessment done by the teacher and any school-related therapists, aides, etc., that the child is working with during the year.  It's not a separate assessment, it's part of the appointments that the child is already going to.  Reforming the assessment process would save millions of dollars each year, and save thousand of hours each year of government employee time which could be directed towards time spent providing direct benefit to the children.

Paperwork Reduction:  The oversite committee will review all forms and paperwork presently required by the agencies to be filled out by the parents, and work towards dramatically reducing the burden that this presents to the parents.  Reform of the paperwork policies would save millions of dollars in government employee time which could be redirected towards time spent providing a direct benefit to these children.

Providers Faire:  Have a "Providers Fair" at the beginning of the school year which would include a variety of service providers, allowing the parents to talk to the therapy and DME (durable medical equipment) providers; educate themselves on the therapy and DME options; then let the parents choose what therapies they feel will be most beneficial for their child, and work with the providers to establish the best schedule for the child.

Annual Agency Meetings including IPP/IEP/MTC Process:  Regional Center's IPP (Individualized Program Plan), the school district's IEP (Individualized Education Program) and CCS MTC (Medical Therapy Clinic) are all combined into one meeting, with representatives from all other forms of insurance, where all of the child's services are determined for the year, with a compliance representative present to make sure that the child is getting all needs met in accordance with The Lanterman Act, The Robert W. Crown California Children's Sevices Act, the IDEA, and the Americans with Disabiities Act, etc.  At the meeting, progress made by the child is reviewed, as well as therapists' recommendations, and doctor's recommendations.  This evaluation needs to be made by competent, caring, nonbiased professionals, and an educated parent that has already been to a "Providers Fair" and knows what good therapy and equipment looks like.  Based on the child's needs, a budget is determined as to the amount of therapy needed, the amount of accommodations required in the school setting, and the amount of careprovider services the child needs in the home setting.  With all parties present, it is determined at that point what the global plan is for the child.  This would eliminate CCS, Regional Center and school personnel from attending more than one meeting per year (unless there are interim issues that arise).   The parent gets to determine, based on the budget, how that money will be spent to most effectively provide the child with the needed services.  For instance, where a child is entitled to diapers, liners, feeding bags each month, possibly the parent would much rather get organic cloth diapers and deal with the laundering, and figure out an alternative to disposable feeding bags, and take that approximately $3000 per month expenditure and apply it to a good therapy program, or get PT students to come to the house and implement a home therapy program.

Budget:  Get the parents involved in the system.  Parents of general ed children, and especially mothers,  spend many, many hours volunteering in the classroom, and being on fundraising committees.  Create a similar environment where we make use of volunteers, parents and other caring people in the community, business leaders, etc., so that we can bring these children the quality services that they need.  Create incentives to these individuals to raise matching funds so that these children get what they need in the most efficient means possible, fiscally and otherwise.  Have a budget committee, including parents and community volunteers, which oversees how the money is being spent, to make sure that it is being spent efficienty and effectively.  Remember, every child that goes from nonambulatory to ambulatory, from disfunctional to functional, or even partially ambulatory and/or functional is saving and millions of dollars in the long run in careproviders, and saved backs.

Insurance:  Force the private pay insurance companies to cover their fair share of the expenses, for example, Blue Shield of California.  Although many of these children have multiple forms of insurance, these children still never can access the therapies and services that they desperately need.  For example, Blue Shield of California, PPO markets that they pay 100% to in-network providers, and will confirm this over the phone, yet in fact, this is how they pay:  100% of the allowable rate for the first 15 minutes; 85% for the 2nd 15 minutes; and 40% thereafter, plus they have a $40 co-pay.  So how that works out is that, on a daily bill of $500 during an intensive therapy program, which is 3 hours of physical therapy (PT) at $125 per hour, plus a one hour body work/massage session at $125, Blue Shield pays: $54 for the first hour of physical therapy less a $40 co-pay, so $14 for the first hour; $40.82 per hour for each of the next two hours of PT, and they pay nothing for the body work/massage.  So, on a $500 daily bill, Blue Shield pays $14 $40.82 $40.82=$95.64 and the parent needs to come up with $404.36 per day, $2021.80 per week, with a grand total for the entire intensive of $6065.40; while Blue Shield is paying $1434.60, while making a huge profit, and profiting off of their fraudulent marketing.  In addition, CalOptima is also on the hook for therapy, yet CalOptima refers parents to physical therapists who will not take pediatric patients, and they don't refer the parents to a competent pediatric therapy group ever, so the children can't access therapy that way either.  And of course, CCS is failing with 94% of the children, which means they don't provide therapy although they purport to, and are spending a lot of money each year pretending to; Regional Center who is required to fund it, doesn't fund it claiming that it is a duplication of services because CCS provides it (which they don't); and the school district relies on CCS to provide it.  Thus, NONE of these children are getting the therapy that they desperately need, and all of these organizations are being funded to provide.  The insurance companies need to be forced to pay their fair share of this bill, and to give the children, who have private insurance, sufficient access to quality therapy.  The taxpayers should not be funding insurance companies' profit margin.

Pilot Program:  Health & Safety Code Section 123835 provides that the California Childrens Services (CCS) of the Dept. of Health Care Services, mandated to provide medically necessary therapy and medical services to disabled children, shall keep abreast of advances in science, and for pilot programs to help accomplish this; CCS is definitely not keeping up  -- in fact, they are doing a terrible disservice to these children in that they are failing with at least 94% of the children they are 'servicing'.  Understanding that this is all supposed to be a collaborative effort with the Dept. of Education, and the Dept. of Developmental Services, create a pilot program with a charter school for nonambulatory, orthopaedically-impaired and brain injured children, which is located adjacent to an excellent private pay pediatric therapy group, for example SKY Pediatrics in Irvine or NAPA Center in Los Angeles.  Have for example, SKY or NAPA, be the MTU Medical Therapy Unit) for the school.  Have a "Providers Fair" at the beginning of the school year which would include a variety of service providers, allowing the parents to talk to the therapy and DME (durable medical equipment) providers; educate themselves on the therapy and DME options; then let the parents choose what therapies they feel will be most beneficial for their child, and work with the providers to establish the best schedule for the child.  Costs for the therapy program should be divided between CCS, Regional Center, the school district, as well as all other forms of insurance, creating a comprehensive program for the children.  A PTA will be established to keep parents informed and connected to each other for the purpose of ensuring the quality of the overall program, and raising funds to support the program.

Dynamic Movement for the Orthopedically Impaired:  The Dept. of Education should be required to provide nonambulatory and orthpedically impaired children with at least as much dynamic movement that is being provided to the general ed student.  This is not happening.  The general ed students get 56 minutes a day of P.E., i.e., dynamic movement, plus of course they are, on their own, getting dynamic movement throughout the day.  The nonambulatory kids get zero!  And who needs it more?  The competent therapists, e.g., SKY and NAPA, will train the classroom teachers and aides on incorporating dynamic movement into the classroom, so that these children get as much dynamic movement throughout the day as possible.  The careproviders and family members will also be trained on this dynamic movement program, so that the program is also incorporated into the home setting.  Then, we track the progress that we can get with these kids.  An example of what can be accomplished through the intensive therapy model is attached, showing before and after pictures.  They are quite compelling on why everyone should support an intensive therapy model.  The last page of pictures on the first file shows improvement in the child's rib cage on the right side.  It protruded out much more Week One.  This improvement is the frontside evidence that the spine is straightening out as a result of this work, which is huge!!  CCS has for years been pushing for spine surgery with this child.  Interesting to note a recent funeral for a little girl who died on the operating table while undergoing spine surgery at Children's Hospital Orange County.

Bone Marrow Transplants (BMT)/stem cells:  H&S Sec. 123985:  Modify the language of Health & Safety Code Section 123985 to broaden it to stem cell transplants/BMT to include CP and autoimmune diseases.  The dramatic improvement that of a girl with MS has shown since her BMT/stem cell transplant in Chicago two months ago clearly demonstrates that CCS will SAVE money by getting these children well.  This girl was looking at thousands and thousands of dollars each month of bills for medication, nursing, therapy, etc.  For a one-time $125,000 cost, she is now on her way to a possible full recovery, where, this high school valedictorian will go on to graduate from college, and possibly graduate school, and become a contributing taxpayer, rather than a dependent tax consumer.  She had lost her ability to walk independently, write, use her hands, talk clearly.  All of these symptoms are going away since the transplant.  She can now walk independently for up to two hours, she can now write, her speech is improving.  BMT/stem cell transplant is a very efficient use of funds.