There are so many different services and some vary state to state, I thought we could all help each other by posting what is available out there to help families and children affected by DW. Things like Early Intervention, Social Security, Katie Beckett Waivers and anything else anyone can think of. I’ve talked to parents recently who have had no idea such programs exist and were amazed with the help they got once they were pointed in the right direction. So there you have it, whats out there? What works? What has helped your family the most? Lets share with each other so everyone can see whats available!

4 Responses

  1. Maryland State Services

    First, learn who your Member of Congress where you live at You will may want to call their staff if you get push back from anyone involved in your case and ask if they can intervene on your behalf. Look up their contact numbers to call on their website, tell whomever answers the phone that you are a constituent coming to them because you need immediate help with (like the Social Security Administration for newborns that may likely need service so that you can address critical health care issues for them who happens to be in the hospital and has been since birth, etc.). Share, or encourage other families to share as many details as you/they are comfortable with and that are necessary to get you to someone who can help you.

    What you need them to do is help you EXPEDITE obtaining a social security number for your child if you don’t already have one so that you may file benefit applications. Also tell them that you could use help getting an appointment with your local branch of the Social Security Administration scheduled for as soon as possible to apply for SSI and SSDI on their behalf. Thank them profusely and tell them that you will tell all your family and friends about how the Member of Congress is helping your family. (They are up for election every 2 years. Lay it on thick if you have to.)

    Second, it may help to ask a doctor to write a letter that documents the child’s condition(s) which existed since birth and any disability that is expected to be life long.

    Third, here are the steps to first qualify for DDA Service, then use that to apply for a Medicaid Waiver and then possibly use Medicaid along with a diagnosis to apply for Rare and Expensive Case Management (REM). REM can help you provide nursing care or other services for your child if they need it.

    A. File an application for the child ( for DDA Services. This is important because once they are approved you may then…

    B. Apply for Maryland’s Medicaid Home and Community-Based Service (HCBS) Waiver at this website ( Just jot down all your questions along the way filling this out (the Maryland Disability Law Center in step 4 will be able to help you answer them). Once filed the waiver application process can take a few weeks to work but can be well worth the effort. We can use your state elected officials to get this expedited. You can look them up at: www.

    Here is the key point to understand with this waiver. “Waiver eligibility for Medicaid counts only the applicant’s income regardless of his/her age.” Said a different way, it will only count the income and assets in the child’s name. If there is nothing in their name that is perfect and you will want to keep that way. DO NOT let your friends and relatives set-up bank accounts or trust funds in her name without talking with an attorney that has experience with Special Needs Trusts or this will count as her assets when determining Medicaid eligibility.

    C. Once the waiver is approved you will want to apply for Rare and Expensive Case Management (REM) Program ( by completing the form at,%202004.pdf and submitting it. This one will need a doctor’s signature so you may be able to get someone to complete it now but hold it until you get Medicaid services via SSI, SSDI or a waiver.

    There is a deliberate process to follow: A. Apply for DDA Services. B. Apply for Maryland’s Medicaid Home and Community-Based Service (HCBS) Waiver once you hear from DDA. C. Apply for REM once your child has Medicaid.

    Forth, and lastly, it wouldn’t hurt to call the Maryland Disability Law Center at 800-233-7201 ( and tell them you want their advice on applying for something called a “DD Waiver” (what I’ve tried to describe above). They give free personal legal advice when it is related to advocating for individuals with a disability. It can never hurt to get another opinion.

    So there you have it for the “Free State” my friends. Good luck!

  2. For Federal Employees

    For federal civil servants we may want to consider documenting the process for parents on the process to get a letter from one of their child’s doctors that state their condition(s) which existed since birth, that they had a disability that is expected to be lifelong and that they will need to rely on the parent(s) for future needs which include health insurance. This letter is what they will want to send to their HR Rep requesting to seek a determination that will allow their child to remain on their health insurance even after they reache age 22. Their HR will make the determination and then let OPM know who will in-turn notify the insurance company. The actual insurance complany is not involved in the discussion.

  3. Our situation is a bit unique, but may relate to some folks out there. We are our dandy baby’s grandparents, not his parents, so in NY State, we are not LEGALLY BOUND to provide for him financially. Since his biological father is not interested and does not have a job, and since our daughter is not working, the baby would not have an employer-sponsored health insurance plan. Since his parents are both unemployed and neither has custody, and since our own income does not count, Kirk qualifies for Supplemental Security Income (SSI). This is a monthly stipend from Social Security to help support the baby. The check comes in my name and I have to fill out a report each year indicating how the money is being spent and/or saved. I just keep all receipts in a folder as proof. Believe me, it helps toward his special formula.
    Because he receives SSI, he qualifies for Medicaid insurance. There is no co-pay and no premium.
    Here in Ulster County, NY, there is a fantastic Early Intervention program. There is no cost to be in this program. EI provides Occupational and Physical Therapists, a Special Ed teacher, a TVI (Teacher for the Visually Impaired), a Speech Therapist and a Nutritional Specialist for Kirk, and all services are provided right in our home. Some are several times a week. I did have to resign from work to be home all day in order for the services to be scheduled, but that was a sacrifice I was able and certainly willing to make to be sure that Kirk gets all the stimulation he needs (and we get advice on what we can do between visits).
    I’d say the most important thing is to be as educated and informed as you can be about the issues your d/w baby has and be proactive and a stern advocate for what is in his/her best interests.

Leave a Reply