Private duty nursing

My daughter has the HCBS medicaid waiver. Are children with Type 1 diabetes eligible for private duty nursing? She seems to not be able to access a lot of the support available to her because providers will not take over her medical care when they have her and will not carry emergency medication under any circumstances.

Hello @jjemo5 welcome to the Type One Nation forum. We are not a professional group, we are people who have or care for a loved one with Type 1 diabetes.

HCBS is a complex issue, with services that vary by state. I was able to find a manual for the New York area here Perhaps you can find some answers?

Check with your local Department of Disability Services - they are familiar with the guidelines in your area. My sister is developmentally disabled and receives supervised living services (she is not diabetic). She takes oral meds which I believe are administered by her caregiver but has separate nursing care as well. What falls under her waiver and what is under her disability benefits in not sure of but DDS should be able to give you guidance.

Jamie @jjemo5, I don’t have much more to add to what has been posted. Whay is important to know is that benefits vary by geographic area; following government link allows you to select YOUR area and learn availability:
Home & Community Based Services | Medicaid

Thank you. I know that I can’t get professional advice. I was just trying to see if anyone else had navigated this before. She is too fragile for regular respite and other services, but not fragile enough for the medically fragile services. I didn’t know if anyone might have had some experience as I can’t seem to find anyone to help me with this. I have reached out directly to my care manager and NYS.

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@jjemo5 The JDRF runs another program called “Online Diabetes Support Team” or ODST. Go to the resources tab above and click “Get personal support “. Or you can just click here

There is an insurance/services specialist that might be able to help you directly click the link above and put your question in the form. Good luck :four_leaf_clover:

Check to see if there is a disability lawyer in your area: my mother found one who was instrumental in helping her establish guardianship of my sister, and navigating and understanding benefits in preparation for her to move into a supervised apartment.
The agency that manages her apartment and daily needs, coordinates which services fall under standard care (for lack of a better word) and waiver. They are accountable to Disability Services, and if I ever felt they were not doing their job I could contact the DDS case manager.
If you are in th DC area I’ll be happy to message you the contact info for the practice we use.

Hi @jjemo5. You popped into my mind so I thought I would reach out to see if you were able to get the services your daughter needs?