When Your Child Doesn't Qualify for Social Security

Ready for his MRI and cuddling with Daddy.

Ready for his MRI and cuddling with Daddy.

Having a child with special needs does not discriminate based on your income level.

It just doesn’t.

However, if you are not considered low income by the Social Security Administration, your road to obtaining assistance on a federal and state level is MUCH more difficult. “You don’t qualify” will be the most frequent phrase you encounter, and you will believe that, but I’m here to tell you there is another way in West Virginia.

There is no ONE organization you can call that will disclose all of the programs you can possibly qualify for, most likely because they simply don’t know. The only way you can find assistance is to ask the right questions, talk to the right people, and it’s EXHAUSTING! Sometimes you feel like you are going around in circles, but I want to help you on your journey.

I am sharing what I have learned so you don’t have to make the numerous phone calls like I did. This is your starting point on your road to obtaining a medical card and other benefits for your child in WV.

Let’s get started.

If you are a middle income family, you don’t qualify for social security. DHHR will direct you to apply for SSI at www.WVinroads.org. Your goal here is to obtain your denial letter, because that will help you apply for the Children with Disabilities Community Service Program (CDCSP).

CDCSP is a Godsend, truly. The program is designed to provide assistance to families, but only based on the child’s income and qualifying medical condition. If approved, your child will be awarded a medical card that acts as a secondary insurance to your primary. It will pick up copays and help pay for other medical needs your child may have. The application process is rather daunting and there are several parts:

  • Demographic info
  • A medical assessment to be completed by your child’s physician,
  • A psychological evaluation
  • A cost estimate worksheet
  • Attachments and Estimate of Benefits from your Primary Insurance Carrier
  • Denial letter from SSI.

 You WILL need help filling this out. I encourage you to reach out to your service coordinators from Birth to Three for assistance.

Once your child receives a Medicaid card, pat yourself on the back! You did it! 

With a Medicaid card, they will automatically qualify for WIC if they are under 5 years old. Again, this is not based on your income. Contact your local WIC office and schedule an appointment. Your child’s formula will be paid for and will receive a monthly food package based on their age group. 

Each leg of this journey has taught me something new. I am not too proud, but slightly ashamed to admit that I stereotyped certain government programs based on the stereotypical people who take advantage of them, but those are not the only people who receive assistance. I am more humbled than ever, and thankful for Maxwell teaching us to be better, more forgiving and accepting people.

My family receives assistance from WIC for Maxwell because his needs qualify. We are honest, educated, hard working people who had to get help because the costs of caring for a child with special needs can be astronomical. Next week, we will have the full genome sequencing test done for Maxwell. The cost of this single test is $10,000.

Other programs to help provide assistance to your child include:

IDD Waiver (aka Title 19) - This program is available for children with special needs if they are 3 years of age or older. If approved, they will be placed on a wait list. The wait list is 5+ years, but once off the list, your child will be awarded a Medical card and other benefits. Read more about the program and application process here:

Link to apply: http://www.apshealthcare.com/publicprograms/west_virginia/WV_Title_XIX_MRDD_Waiver_Forms.html

The program Director's contact info is here: http://www.dhhr.wv.gov/bms/Programs/WaiverPrograms/IDDW/Pages/default.aspx

I will do a separate blog post about how we obtained waiver for Maxwell.

HIPP Program

The HIPP program reimburses you the cost of premium you pay for your child upon meeting eligibility requirements. Must have Medicaid to apply.


I am preparing to apply for the Children with Special Healthcare Needs Program. I know they do have an income requirement, so I am not sure we will qualify. I will update you on what I find out!


****Here is the information to apply for the CDCSP Program***

CDCSP Contact #: 304-776-7230 (They can email you an application if you are unable to find it in the pdf file below). http://www.dhhr.wv.gov/bms/Provider/Documents/Manuals/bms-manual-Chapter_526_CDCSP%202015.pdf

There may be other programs out there that provide assistance. If you have any information regarding other programs families with special needs children can apply for, please comment below. Share this post with anyone who could use the information. It may help a family struggling financially to keep up with all of the medical bills.

The special needs highway can be a lonely place. I just want you to know there is another person out there buzzing along with you. Never hesitate to reach out. The only way we continue to make our way is together.

All the love, prayers, good vibes, and support to you and your families. Safe travels.