I Wish I Would Have Known Then…

…What I do now. This posts is geared towards all the things that I wish I would have known before now. These are things that I know now because of experience, things that I found out about too late, and things that I was told but was lost in the sea of over-information.There are blue links below to guide you for more information.

Volume 1: Financial Assistance and Programs

Become an LPN

In home nursing is expensive! In the state of Ohio (I can’t speak for other locations), you can care for your own child with special needs and get paid for it. That’s right! Be a Stay-At-Home-Mom (SAHM) and get paid for the toughest and most rewarding job that life has to offer.

Some babies will go home after hospitalization and require special needs. For example, Jack requires oxygen and continuous feeding 24 hours a day. He also has an ileostomy that requires (constant) attention. Teamed with the fact that he is not healthy enough for day care, he requires an in-home nurse while Matt and I work out of the home. Now speaking from experience, the in-home nurse staffing companies are less than accomidating when it comes to finding a nurse that will fit your needs as well as someone that you will be comfortable having take care of your disabled/fragile child in your home. An LPN certification will be your life-saver at this point (unless your child requires a RN). Some in-home nursing agencies will actually hire you on to take care of your own child! I have not researched the average income you could receive from such ventures, but for some and especially those that intend to be SAHM, this could be a dream come true. It can take up to one year to receive your certification and some staffing companies require that you have your LPN for a minimum of 1 year prior to hire, but there are some out there that will hire you to care for your own child with only the certification. At this point, the staffing company will bill your insurance or government sponsored program which will in turn pay you.

I am only a couple credits away from being eligable to take the LPN certification exam (dietetics undergraduate). So why am I not taking the test? Matt feels that my current career is too valuable to leave for a two year gig in the long run. Maybe he’s right…I’m still struggling.

Government Sponsored Programs

My last point brings me to government sponsored programs. These all may vary depending on your residence but below are the programs that Matt and I are researching for our situations. All these programs have some kind of quilifier to be eligable for benefits, so check with your city, county, or state. I have found that the best resource for this is the social worker at the hospital of which your child was/is being treated. Cincinnati Children’s Hospital was (and continues to be) more than helpful!

BCMH:Bureau for Children with Medical Hanicaps. The BCMH website lists major componants of the program to include “conducting quality assurance activities to establish standards of care and to determine unmet needs of children with handicaps and their families; funding services for the diagnosis and treatment of medically eligible conditions; collaborating with public health nurses and local health departments to assist in increasing access to care; supporting service coordination for children with selected diagnoses; and assisting families to access and utilize appropriate sources of payment for services for their child.”  This program tends to work along side Medicaid within the Ohio Department of Health (ODH).

Medicaid: Ohio Medicaid is offered through the Ohio Department of Job and Family Services (ODJFS) and assists in the financial aspect of medical care. We are currently submitting some of Jack’s hospital bills to be covered by Medicaid.

Social Security: In Ohio, you are required to be approved for SSI before you can apply and be approved for Medicaid. Thought this isn’t a major support in Jack’s financial sand pit but anything helps, and this opens the door to other programs available to disabled children.

Help Me Grow: Provided by Ohio Department of Health “Help Me Grow provides many types of services to infants and toddlers with developmental delays or disabilities and their families. A system of providers works together to provide early identification and family-centered services that ensure your child receives identified services and access to community resources. The program will provide appropriate specialized services and will help you identify present and future needs of your child.” I know that this program is offered in other locales with a different name. Check with your local health department for the name of the program in your area. Matt and I are currently setting Jack up for his Developmental Evaluation to see where he falls on the developmental milestones. His Occupational, Physical and Speech Thrapies will start in the home once his need level is established.

Easter Seals Disability Services: The Easter Seals provide services and support to ensure that children with diabilities “can live, learn, work and play in our communities.” We are using their services to help minimize the financial burden that comes with early intervention. An example is assistance in the cost of a orthotic helmet to correct plagiocephaly or ‘flat head syndrome’ which Jack suffers due to being bed-ridden for an extended period of time. The average helmet can cost around $4000 and most insurance companies view this as cosmetic and will not cover the cost.

Easter Seals is an international charitable organization and is not reginally specific. I encourage everyone to contect the Easter Seals and inquire about assistance.

That will be it for now. I will add more in a continuing post. Keep checking back.

Is there a program that you are aware of that could help parents of a disabled or speacial needs child? Please comment and let us know!


2 thoughts on “I Wish I Would Have Known Then…

  1. about Ryan and Kaitlyn

    Good Morning! I stumbled upon this website and very happy I did so. Your story about Jack is very touching and most obvious he is truly loved very much. I am a parent of 2 special needs children, my youngest 2 (Mother of 4 currently in PA). I work outside the home and finding it more difficult as the kids are getting older (daughter just turned 10 and has Tourette’s, ADHD, and ODD and son just turned 7 – 3 days apart, and has Autism, ADD, and OCD.) I am desperately looking for any resources myself on how to stay home with them and get paid while caring for them. Every road is a dead end and very discouraging and frustrating. SSA says they have never heard of anything like this, and Bucks County Assistance Office says the same (BCAO) I will be more than happy to pass along ANY info I may hear of for you. In return, any info or links would be much appreciated for myself for the state of PA. Best of luck and best wishes for you, your lovely family and precious Jack. Take care and God Bless…….

    • Kelly, I’m glad you found the post helpful. It is very difficult to find a balance between caring for your special needs children and keeping an income. We have an in-home nurse now through our county. I still work outside the home but would love to stay home with our son and lead his care. I have yet to find how that is possible while staying out of the poor house.

      I will certainly pass along any information I may find that could pertain to your location.

      I wish you luck on finding resources to take care of your family.

      Thank you for stopping by and I hope spring is heading your way as well. We finally had above freezing temperatures today.

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