"We Need Support! How Do We Find Help?"

 

You need help!  It may be in the form of a supportive circle of family, friends and community. It may come from state/federally funded services. It may be through local charities or organizations with resources they can direct to your family. Whatever the source, step-by-step, you can connect to what you need.

The First Step

To create an "Exceptional Circle" of family, friends and community to help your family in times of need, link to our step-by-step guide.

"Creating Your Exceptional Circle of Support"

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The Second Step

What Are Your Needs?

Being clear on what you need gives you some direction as to where to get those needs met.  Go to our step-by-step guide:

Assess Your Immediate Needs

 

The Third Step

Finding Services

Developmental Disability 

Early Intervention Services, IDEA
Medicaid CAP MR/DD
State Funded Services*

Through Early Intervention Services (0-3) and IDEA (3 and older), your child can obtain services.  Also, there are state and federally funded services for Developmental Disability through Medicaid - CAP MR/DD.  The first step is to call your local/regional Social Services office.  A child usually needs the state to declare them as having a developmental disability, which requires some paperwork and a waiting period.  This can be an emotionally difficult thing to do!  However, the services you can receive may help your child make serious gains in his or her development!  It is up to you.  

Private pay is another option, if you can afford it.  This option gives you more control but can be extremely challenging financially.  Insurance may partially pay, but for some diagnoses (like autism) they won't pay out much at all (if anything!)

There is a waiting period to obtain CAP MR/DD status.  This status can help your child for the rest of their lives, if their diagnosis remains the same. There may be state funded opportunities that can be tapped into while you wait.  *States differ in their level of services, with some states not offering much, if anything, at all! This changes often, based on state budgets. It is best to go to your state Medicaid site and search for "developmental disability"  to see what is available.

Medline Plus - go to "Understanding Your Child's Diagnosis" for how to find the Medline Plus list of organizations that are related to your child's diagnosis.  These may not be the only resources, so go to those sites and see where they direct you in turn.

Medically Fragile 

If your child is medically fragile, they may need help developmentally as well, in which case please read the above information.  You can go to your state's Medicaid website to see if there are special services for medically fragile children, and what the qualifications for that state are.  (A simple internet search can find you the right site.)  Insurance may help to pay for some services, if you have it.  If complicated home care is needed, it may be possible to have some in-home nursing care approved by your insurance company.  Private pay is always an option for home nursing care, and these services can be found locally, though they are often expensive.  Do your research on the companies you have to choose from to get the best care possible - agencies differ in their quality.  Always make sure that anyone providing respite, whether professional or a family member/friend, is knowledgeable about your child's condition, needs, signs for when they should contact you or the child's doctor, etc.

The Fourth Step

Tapping into Organizations & Charities

If you have a case manager, they may be able to help you locate charities available to you for your child's condition.  A religious community you are connected with may also be willing to help.

Help with travel expenses to hospitals, respite care, home modifications (ramps and such), etc. MAY be available in your area.  National organizations may also be available for your child's situation.

 

Medline Plus - go to "Understanding Your Child's Diagnosis" for how to find the Medline Plus list of organizations that are related to your child's diagnosis.  These may not be the only resources, so go to those sites and see where they direct you in turn.

 


The Complete Caregiver Resources

Go to our General Parent-Caregiver Resources page

Go to our Autism (ADS) Resources page

The Complete Caregiver Journal Workbook can help you organize your child's care and your self-care

You can email Lynn at lynn@thecompletecaregiver.com 

OR use the Ask Lynn forum section for specific answers to your personal situation.  She cannot guarantee she'll know the exact course for you to follow, and she won't give medical advice, but she will draw from her experience and research to help you in any way she can.  There is no charge or any obligation for this service!


 

                                                                                              

 

  (These statements and suggestions are in no way intended to be construed as medical advice or as advice from a medical professional.)

  

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