Guest Author - Bonnie Sayers
If you are a resident of the State of California you are aware of the Regional Center through the Department of Developmental Services. "California's has 21 regional centers with more than 40 offices located throughout the state that serve individuals with developmental disabilities and their families."
There is an intake process that each consumer must go through before they are accepted as a consumer. They are assigned a Service Coordinator for their particular unit. This could start with Early Intervention and move into the School Age Unit and other units as the child gets older and becomes an Adult. For the child from 0-3 their plan is the Individual Family Service Plan (IFSP) before it becomes an Individual Program Plan (IPP). There is a transition at the age of 2.5 to prepare for the next phase and meetings for families to assist in this process. Matthew turned three at the end of June and the school services were set to commence in September. I did not want Matthew to have no program in place for the summer months, so I appealed and got him to continue in the Early Intervention Program through the summer so he would continue with his progress and therapies.
Families entering the Regional Center System want to know right away what services are available to them. There is no quick answer to this because each person has their own individual needs and issues. Plus there are a number of disabilities served by the Regional Center.
It also depends on which location you are served by and the actual diagnosis. Some offices do not count Asperger's Syndrome as an eligible diagnosis. Therefore parents try to get the diagnosis changed to access programs for their child. They might have to pay a fee for various services rendered based on these programs:
Parental Fee Program
Family Cost Participation Program
"There is a requirement for parents to share the cost of 24-hour out-of-home placements for children under age 18."
A child could be eligible based on the diagnosis of their sibling and obtain Early Intervention Services based on the risk of a disability. This is how my son Matthew accessed his Early Intervention Program. His first diagnosis through the Regional Center was ADHD and then seven months later another evaluation determined it was severe autism.
Both my children are consumers of the Regional Center and have the same Service Coordinator. There is a training and events department where consumers or their parents can receive training a certain number of times per year. Each location works differently, but most have seminars and support groups at their offices and families get invited to participate based on the age and disability of the consumer.
I have taken part in some training courses at other locations on Behavior and Support. I went to a few seminars on communication resources to learn what options there are. The Regional Center funded for me to attend a few autism conferences over the years as well. The most recent funding is the Stanley Greenspan Online Course set for April 25, 2008.
There are also emergency funds that help families that are low income with clothing vouchers to stores like JC Penney or a vendor who carries clothing for school and has backpacks. During the holidays there are companies that will adopt families and bring toys and food items to the homes of the consumers. There are also programs that have grocery store certificates for families at Thanksgiving and Christmas. They have parties at various offices and at the vendors locations for families.
Parents can sit on boards for the Regional Centers and volunteer at the offices. They also can work at the libraries and help set up at fairs and expos. There are fairs to share about social and leisure activities where families can learn more about these organizations. Employment Opportunities
Transportation Services is another option for families when they have no other means of getting to the therapy appointments. When our vehicle was out of service we received transportation through a taxi service where each week I had to call and request a pick up and then make sure they were at the clinic once our session was over. There were several instances where we waited a long time for a ride home and it was night and dark. This does happen if you have late afternoon appointments and the freeways here in Southern California are heavily traveled. It helps to always bring fidgets, food and drink for the appointments so everyone is occupied and not starving. You might want to bring homework also for the siblings while therapy is taking place.
Summer and winter camps are options through the Regional Center as well. You do need to look into these options early in the year due to waiting lists and the time it takes to get funding approved. If the school offers a similar program over the summer months you most likely will only get it partially funded. The summer camp my children attend runs for six weeks and they used to have Extended school year (ESY) through their respective schools for a three-week period that we declined. I apply through The Achievable Foundation for a grant to fund the autism summer camp.
Sports and recreation activities are services that can be added to the IPP. This would include baseball, wrestling, karate, bowling, swimming lessons and horse riding lessons. My children have no interest in sports so I have not pursued this further to see what exactly can be funded. I do know that Keen is a vendor.
Respite Services are for the parents to get a break and either have someone in the home from an agency watch the children while they go out for a meal, attend a workshop or see a movie. Another option is to have the respite worker in the home while you do some reading, computer work or just have an extra set of hands around.
The problems with the respite system is that the pay is very low and there are a lot of requirements for the workers to gain employment through the agencies that are vendored with each Regional Center. Trying to get the same worker each time is not an easy task. Depending on the severity and number of children in your household who are consumers, your hours will not be the same as other families. Some locations might still let you hire your own worker, but I think this has changed throughout the State. I have gone through many agencies with not much luck.
These services are changed on an annual basis with your IPP meeting at the home with the consumer and Service Coordinator. When you want to change a vendor you contact your worker with the request. They send an amendment that is signed by parent, service coordinator and the regional manager before it becomes effective.
This is the same policy for all therapies that are requested. The first step is an authorization for just the assessment. Once this is approved there is a time frame you need to get this done by. The vendor sends a report to the Regional Center that goes through the funding process. When this is approved the consumer receives another amendment with the dates the therapy is approved for, how often and where they take place. This is also contingent on an outcome that is listed on the form.
An example - IPP Amendment
Reason for Amendment - Additional Outcome Plan/Living
Outcome - To maintain consumer in the home family will receive respite care to alleviate the stress of raising a child with a disability.
Supports - Mother will receive 32 hrs/mo (sib rate) of agency respite thru XXX to maintain consumers at home from 11/1/07 - 10/31/08
Respite will be reviewed at least on a yearly basis and re-authorization will depend on outcome of providing relief to parent.
There have been times that I was not pleased with the assessment report for a therapy requested and did not pursue it further. Also a few years later we requested a therapy through another vendor and had better results. While receiving therapy services through a Regional Center vendor you can always request a change in therapists. We first changed vendors with Floor Time and then therapists at the second clinic.
My children each received a three month period of music therapy before they changed the rules to incorporate typical neighborhood children into sessions and we opted out. Nicholas had an adaptive skills trainer for a six month or one year period with Jay Nolan Services as the vendor.
Other services available for families include the following:
Parenting Skills Training
Behavior Management Training
Adult Day Activity and Training
After School Care
Intensive Intervention Services
Extended Day, Year and Saturday Services
Childbirth Education and Preparation Services
Licensed Residential Facilities
The IPP Plan covers living, education/work, social/recreation and health. Consumers can get recommendations for dentists, therapists, support groups and also request their Service Coordinator to be part of the IEP team at school. If there is an incident at a vendor the Service Coordinator will have to visit the site to file a report and review their procedures. This happened many years ago when Nicholas burned his hand while they were cooking at summer camp.
The Regional Center will want copies of the IEP and obtain progress reports from vendors to determine continued therapy. They will also request physician records and want medical forms filled out. Consumers can have access to their files and have copies of documents for their own files.
I have taken part in studies that were done at the Regional Center offices and also a nurse visited once to see how the feeding was handled at home with Matthew. Many years ago when registered with a visitation network the counselors there faxed their reports to the Regional Center since I did not have a Lawyer and I wanted to know what was taking place during parent visits with the noncustodial father.
Regional Center workers also attend conferences, trainings and support groups and can pass along information they learn and obtain to consumers. Many Regional Center Service Coordinators and Managers are parents and relatives of those with developmental disabilities.
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Appeals, Complaints and Comments
Transition to Adulthood
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Focus on all Child Therapies - F.A.C.T.
Educational Autism Tips for Families 71 page resourceful ebook for families entering the school system with a recent autism diagnosis. Find out what issues take place over the course of a school day and meet these challenges head on.