🚨 CORRECTION: Urgent! Oppose Restrictions to Pediatric Nursing Services

Published: Thu, 02/01/24

Advocacy Opportunities

& Resources

CORRECTION: Please use the revised version of the draft comment language in this email below. We have updated the draft to more accurately reflect and respond to the specifics of the proposed rule change (revised language is highlighted).

Act Now: By Monday at 5 p.m. (Feb. 5) Submit Comment Opposing Proposed Rule Restricting Pediatric Nursing Services

Quick Summary

We are facing a proposed rule change by Texas Medicaid that could have severe accessibility implications and consequences for medically fragile children and their families, potentially leading to increased institutionalization.

Your voice is crucial in safeguarding the rights and well-being of these individuals. Thank you! See below for updated draft email language and the email address for comments.

Background

Texas Medicaid has proposed this rule change, §363.309 (o) (3) and (4), which introduces limitations on PDN services: The proposed rule states, “A responsible adult must designate an alternate caregiver who is an adult as defined by the Texas Family Code and who agrees to accept total responsibility for the recipient in the absence of the recipient’s responsible adult. The designated individual must be in the home while PDN services are being provided. The designated individual must not be the PDN services provider.”

Private duty nursing is a lifeline for many families, allowing children with complex medical needs to receive skilled care at home. The necessity to designate a caregiver would hamstring some families’ ability to access these critical services in the midst of juggling the already challenging demands of caretaking.

Related resources:

Private Duty Nursing Makes Community Living Possible (a blog post on the topic from 2023)
The Arc's healthcare-related policy advocacy
Rulemaking and the public's right to review and comment

By Monday at 5 p.m. (Feb. 5)

Submit your comment via email to Texas Health and Human Services (HHS) by sending the draft language below to [email protected] (deadline is 5 p.m. on Monday, Feb. 5).

Updated draft comment language for your use:

Subject: Comments on Draft Rule 23R068

I am writing to express my strong opposition to the proposed rule change, specifically §363.309 (o) (3) and (4), which introduces limitations on Private Duty Nursing (PDN) services. As a member of The Arc of Texas, I am deeply concerned about the potential impact this rule change could have on medically fragile children and their families.

[Personalize this section with your own experiences or insights if applicable.]

The proposed restriction states that, “PDN services do not replace a recipient’s responsible adult. It is not permissible for a responsible adult to be away from the home for any period of time while PDN services are being provided with the expectation that the PDN services provider will accept total responsibility for the recipient.” and “A responsible adult must designate an alternate caregiver who is an adult as defined by the Texas Family Code and who agrees to accept total responsibility for the recipient in the absence of the recipient’s responsible adult. The designated individual must be in the home while PDN services are being provided. The designated individual must not be the PDN services provider.”

This proposed change is unprecedented and would significantly limit access to these critical services (i.e. particularly for single-parent households). Private duty nursing plays a vital role in allowing children with complex medical needs to receive skilled care at home, fostering their well-being and community integration. The necessity to designate a caregiver will hamstring some families’ ability to juggle the already challenging demands of caretaking.

I urge you to reconsider the implementation of this proposed rule, as it not only jeopardizes the rights of medically fragile children, but also poses a significant threat to the family structures that support them.

Thank you for your attention to this matter, and I trust that you will prioritize the well-being of these vulnerable children in your decision-making.

Sincerely,

[Your Name]
[Your Address]
[City, State, ZIP Code]
[Your Email Address]
[Your Phone Number]

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