Being the parent of a chronically ill child does not come easy or with a handbook. More often than none, you will be challenged by your insurance or other government organizations who will want to reduce or cancel your services. You must never back down! There are many ways to keep what you have in place. It is critical to the survival of your case that you entertain a good relationship with your care team and that you spend time to supervise and work with each and every providers. You must learn to become your child’s voice and advocate.
Children And Family Resources
YOUR SUPPORTIVE ORGANIZATIONS IN CALIFORNIA
The Regional Center ( Each RC has its own jurisdiction based on your location)
- West Side Regional Center : (310) 258-4000 (tel:(310) 258-4000)
- Lanterman Regional Center : (213) 383-1300 (tel:(213) 383-1300)
- East Side Regional Center : (626) 255-4700 (tel:(626) 255-4700)
- Inland Regional Center : (909)890-3000 (tel:(909)890-3000)
For a complete listing and map of all the Regional Centers, go to: http://www.dds.ca.gov/RC/RCList.cfm
(http://www.dds.ca.gov/RC/RCList.cfm)
All RC have a program called “early start ” (0 to 3 years old).
It is very important that you get your child into the system as soon as possible. They will send you a social worker and a nurse to evaluate his/her needs. Don’t be shy to ask for what you need. They are a very helpful non-profit organization and according to ”the Lanterman Act” which they are governed under, they are “The payors of last resort”. So when everything else fails, you can go to them and they have to allocate the resources you need for your child. You must always remember that!
- Early Start Program
Here are some of the services your child can receive under the “early start” program, and throughout his/her life.
OT, PT, Feeding Therapy, Home Health Skilled Nursing Care, Custodial Care, and more…
CCS (California Children Services) California Children’s Services (CCS) is a state program for children with certain diseases or health problems. Through this program, children up to 21 years old can get the health care and services they need. It does not come in by itself it is connected to MediCal. The usual services you receive from CCS, are PT and all DME (durable medical equipment).
USEFUL TIPS
There are many different qualifying factors for getting your child and the family approved to receive some of the supportive services you need from MediCal & The Regional Center of your jurisdiction. They go by diagnosis and current clinical status. Because these are so important to your child’s future care, we call them “useful”
Useful Diagnosis: (These are some of the most common…)
- CP (cerebral palsy) with any other associated neuro diagnosis -Genetic Birth Defects leading to mental retardation with/or full or part paralysis.
- Cardiac Disease and any associated diagnosis – Cystic Fibrosis and any associated Pulmonary diagnosis.
* Several other diagnoses may also fall under those categories. Speak with your child’s primary care physician and make sure he/she will spend the necessary time with you to explain your child’s illness. You will need to understand it in order to advocate and obtain the appropriate services.
Useful Clinical Factors: (If your child has the following)
- G Tube
- Oxygen
- Port a Cath and/or long term IV access for meds.
- 100% assistance ( Feeding, bathing, dressing, etc….).
* This list is what will get your child to qualify for short-term or long-term support at home.
HOME SUPPORT
Homecare and Home support will become a very important part of your child’s future. Once you leave the hospital, you are on your own. Therefore from that point on, you need to become your child’s voice and ask for what is rightfully his or hers.
UNDERSTANDING MY CHILD’S INSURANCE
California is a great State for Children with chronic health issues. MediCal is the best health insurance to have your child under.. Make sure to ask your RC Social Worker to put your child on what is called ; the “MediCal Waiver” It will come in handy to obtain many valuable services at home. Such as nursing care and medical equipment (DME).
* Private insurances have their own guidelines and determining factors, it becomes costly and cumbersome.
MediCal, CCS and Regional Center complete each other. You need the help and assistance of all your child’s doctors and caregivers to back up each request you will have. It is critical that you keep the communication line open with them and that you all work as a team. Ultimately it will be your responsibility to case manage your child’s care once he/she leaves the hospital.