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69s proposed rule 26R040 would make it harder for kids to qualify for the Medically Dependent Children Program. Send your comment before Monday, September 21, 2026.</p></div><div class="column-5 w-col w-col-5"><a href="#" class="w-inline-block w-lightbox"><div class="div-block-7 larger"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/6424e2c3aeb3533e84a7fa52_play.svg" loading="lazy" alt="" class="image-8"/></div>
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136 <div class="r26-hero"> 137 <div class="r26-open"> 138 <span class="r26-tag">Action alert</span> 139 <h1>Tell HHSC to fix Rule 26R040</h1> 140 <p class="r26-sub">Comments are due Monday, September 21, 2026. It takes two minutes.</p> 141 <div class="r26-count" id="r26-count" aria-label="Time left to comment"> 142 <div><b data-u="d">0</b><span>Days</span></div> 143 <div><b data-u="h">0</b><span>Hours</span></div> 144 <div><b data-u="m">0</b><span>Min</span></div> 145 <div><b data-u="s">0</b><span>Sec</span></div> 146 </div> 147 <p class="r26-two">Two quick steps. Please do both.</p> 148 <div class="r26-steps"> 149 <a class="r26-cta" href="#r26-step1"><b>Step 1</b>Send your official comment</a> 150 <a class="r26-cta r26-cta2" href="#r26-step2"><b>Step 2</b>Contact your own lawmakers</a> 151 </div> 152 </div> 153 <div class="r26-closed"> 154 <h1>The comment period has closed. Thank you.</h1> 155 <p class="r26-sub">You can still contact your own lawmakers about Rule 26R040 below.</p> 156 <a class="r26-cta" href="#r26-step2">Contact your own lawmakers</a> 157 </div> 158 </div> 159 160 <div class="r26-body"> 161 <div class="r26-wrap"> 162 <h2>What's happening</h2> 163 <p class="r26-lead">HHSC wants to change how Texas decides which kids qualify for the Medically Dependent Children Program. As written, proposed rule 26R040 adds a new "medically fragile" definition and stacks barrier on barrier for families already in crisis. Your comment becomes part of the official record. HHSC has to read it before the rule is final.</p> 164 165 <div class="r26-card r26-primary r26-open" id="r26-step1"> 166 <div class="r26-grid"> 167 <div class="r26-col"> 168 <span class="r26-step">Step 1</span> 169 <h3>Send your official comment</h3> 170 <p>This sends your comment to HHSC and to every member of the Senate and House committees that oversee it.</p> 171 <p class="r26-tip">Personal stories carry the most weight. Before you hit send, add a sentence or tw
171o about your child, or paste in any of the points below.</p> 172 <div class="r26-points"> 173 <h3 style="font-size:20px;margin-top:28px">Optional points to add</h3> 174 <p style="margin:0 0 4px;font-size:14.5px">Copy any that apply.</p> 175 <h4>Fix the language</h4> 176 <div class="r26-pt"><span>Use "medically dependent," not "medically fragile." That is the term this program actually serves.</span><button type="button" class="r26-copy">Copy</button></div> 177 <div class="r26-pt"><span>If a definition of "medically fragile" must exist, it should match the Texas Education Agency's existing definition (PEIMS element E0999), not a new one made up for this rule.</span><button type="button" class="r26-copy">Copy</button></div> 178 <h4>Fix the medical criteria</h4> 179 <div class="r26-pt"><span>Add immunocompromised status as a qualifying condition.</span><button type="button" class="r26-copy">Copy</button></div> 180 <div class="r26-pt"><span>Add autonomic storming as a qualifying condition.</span><button type="button" class="r26-copy">Copy</button></div> 181 <div class="r26-pt"><span>Change "30 calendar days" to "most days."</span><button type="button" class="r26-copy">Copy</button></div> 182 <div class="r26-pt"><span>Replace strict hours-based criteria with "requiring a high level of medical judgment."</span><button type="button" class="r26-copy">Copy</button></div> 183 <div class="r26-pt"><span>Count ER evaluations, not just hospital admissions.</span><button type="button" class="r26-copy">Copy</button></div> 184 <div class="r26-pt"><span>Address the tracheostomy definition: remove "functional" and replace "and" with "or."</span><button type="button" class="r26-copy">Copy</button></div> 185 <h4>Fix the process</h4> 186 <div class="r26-pt"><span>Subsection (E)'s treating-physician input is a good idea, but the wording needs to give a treating physician's clinical judgment real weight.</span><button type="button" class="r26-copy">Copy</button></div> 187 </div> 188 <p class="r26-next">Finished Step 1? <a href="#r26-step2">Go to Step 2: Contact your own lawmakers</a></p> 189 </div> 190 <div class="r26-widget"> 191 <div class="r26-box"><div data-action-button-widget-id="SPK-QEhHQEk=" data-is-sponsored-content="false" show-border="true"></div></div> 192 <p class="r26-alt">Form not loading? <a href="https://actionbutton.nationbuilder.com/share/SPK-QEhHQEk=" target="_blank" rel="noopener">Open it in a new tab</a></p> 193 </div> 194 </div> 195 </div> 196 197 <div class="r26-card" id="r26-step2"> 198 <div class="r26-grid"> 199 <div class="r26-col"> 200 <span class="r26-step">Step 2</span> 201 <h3>Contact your own lawmakers</h3> 202 <p>Your own state senator and representative care most about hearing from voters in their district. Enter your address to email or call them.</p> 203 </div> 204 <div class="r26-widget"> 205 <div class="r26-box"><div data-action-button-widget-id="SPK-QEhHQEY=" data-is-sponsored-content="false" show-border="true"></div></div> 206 <p class="r26-alt">Form not loading? <a href="https://actionbutton.nationbuilder.com/share/SPK-QEhHQEY=" target="_blank" rel="noopener">Open it in a new tab</a></p> 207 </div> 208 </div> 209 </div> 210 211 <div class="r26-share"> 212 <p class="r26-open">Forward this page to other Texas families before Sept. 21.</p> 213 <button type="button" id="r26-link">Copy link</button> 214 <a id="r26-fb" target="_blank" rel="noopener" href="#">Facebook</a> 215 <a id="r26-x" target="_blank" rel="noopener" href="#">X</a> 216 <a id="r26-mail" href="#">Email</a> 217 </div> 218 </div> 219 </div> 220</div> 221
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274 275</div></div><div class="section"><div class="container"><div class="align-center inverse w-row"><div class="column w-col w-col-6 w-col-stack"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a7a1af54c56336e385bc6_noun-love-5120675.svg" loading="lazy" alt="" class="image-5"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a7b15cec88a5ca9a31783_texas-blue.svg" loading="lazy" alt="" class="image-4"/></div><div class="w-col w-col-6 w-col-stack"><h2><strong>What Does It Mean To Be Medically Fragile?</strong></h2><p>"Fragile Kids" are children with medical complexity that is defined as having multiple significant chronic health problems that affect multiple organ systems and result in functional limitations, high health care need or utilization, and often the need for or use of medical technology.<strong><br/><br/>Since the STAR Kids program was established in 2016, children with medical complexity have been experiencing significant gaps in coverage, excessive waitlist times, limited providers, and issues accessing quality care, among other problems with STAR Kids, STAR+Plus, and Texas Medicaid. <br/>â<br/></strong>Join PTFK in standing up for the medically fragile by urging your legislator to take action by passing immediate patient protections, improving Medicaid provider rates, and implementing an alternative, more appropriate model of care for Texans with disabilities and complex medical needs.</p></div></div></div><div class="container mt-60"><h2 class="text-center mb-40">Ways to Give</h2><div class="give-flex"><a href="/donate" class="bttn padded w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a375c3ed75978493a5591_noun-heart-5597619.svg" loading="lazy" alt="" class="image"/><div class="bttn-txt">Donate Today</div></a><a href="/volunteer-to-help" class="bttn padded w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a375cb8c402580c15e200_noun-volunteer-3421986.svg" loading="lazy" alt="" class="image"/><div class="bttn-txt">Volunteer</div></a><a href="#rule-26r040" class="bttn padded w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a37fecea004363b418095_noun-speech-bubble-1624513.svg" loading="lazy" alt="" class="image"/><div class="bttn-txt">Contact Legislators</div></a><a href="/faces-of-ptfk" class="bttn w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a38384884711676858fd7_story.svg" loading="lazy" alt="" class="image"/><div class="bttn-txt">Share Your Story</div></a></div></div></div><div class="faces-banner"><div class="div-block-2"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e614c876b75cf9e40_galleryimage41.jpeg" loading="lazy" sizes="(max-width: 810px) 100vw, 810px" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e614c876b75cf9e40_galleryimage41-p-500.jpeg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e614c876b75cf9e40_galleryimage41-p-800.jpeg 800w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e614c876b75cf9e40_galleryimage41.jpeg 810w" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ecde7bc5a9cbeeb27_galleryimage31.jpeg" loading="lazy" sizes="(max-width: 720px) 100vw, 720px" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ecde7bc5a9cbeeb27_galleryimage31-p-500.jpeg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ecde7bc5a9cbeeb27_galleryimage31.jpeg 720w" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0eac3aee6f8f634264_galleryimage9.jpeg" loading="lazy" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e45baae35713e62e7_galleryimage13.jpeg" loading="lazy" sizes="(max-width: 720px) 100vw, 720px" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e45baae35713e62e7_galleryimage13-p-500.jpeg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e45baae35713e62e7_galleryimage13.jpeg 720w" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0fc04bba68a38c6b0a_galleryimage37.png" loading="lazy" sizes="(max-width: 614px) 100vw, 614px" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0fc04bba68a38c6b0a_galleryimage37-p-500.png 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0fc04bba68a38c6b0a_galleryimage37.png 614w" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e614c876b75cf9e40_galleryimage41.jpeg" loading="lazy" sizes="(max-width: 810px) 100v
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275w, 1280px" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0fee3fcb82f215c93e_galleryimage42-p-500.jpeg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0fee3fcb82f215c93e_galleryimage42-p-800.jpeg 800w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0fee3fcb82f215c93e_galleryimage42.jpeg 1280w" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ff6e779929de197ae_galleryimage43.jpeg" loading="lazy" sizes="(max-width: 810px) 100vw, 810px" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ff6e779929de197ae_galleryimage43-p-500.jpeg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ff6e779929de197ae_galleryimage43-p-800.jpeg 800w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0ff6e779929de197ae_galleryimage43.jpeg 810w" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e9b82584342f8cc83_galleryimage8.jpeg" loading="lazy" alt="" class="image-2"/><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a5d0e6f25b7fccc2c5b9c_galleryimage26.jpeg" loading="lazy" alt="" class="image-2"/></div></div><div class="story-link-section"><div class="container text-center"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a7a1af54c56336e385bc6_noun-love-5120675.svg" loading="lazy" alt="" class="image-3"/><h2 class="text-center">The Faces of PFTK</h2><p class="paragraph">Children who are medically fragile live with rare conditions and complex disorders</p><a href="/faces-of-ptfk" class="bttn w-inline-block"><div><strong>Read Their Stories</strong></div></a></div><div class="tan-fade-down"></div></div><div class="section tan shape-right"><div class="container mb-100"><div class="align-center mobile-reverse w-row"><div class="pr-5 w-col w-col-6"><div class="text-block-3">THE ISSUE</div><h2><strong>Texas Must Do Better To Protect Our Most Vulnerable Citizens</strong></h2><p>The STAR Kids program has failed to provide effective  care and support for families with medically complex children who are struggling to keep their families together and children out of institutions. The program's execution has been poor, marked by denials of critical life-sustaining care, significant gaps in care, inadequate networks, lengthy waiting lists to access care, ineffectual support services, regional county-based service areas limiting access to care, and exponential increase in administrative burden.  <br/><br/>Overwhelmed families have been left trying to piece together a way to keep their child alive and stable . There is a clear need for better healthcare policies and programs that prioritize the needs of the most vulnerable members of society, such as medically complex children.</p><a href="/the-issue" class="bttn w-inline-block"><div>Read More About the Issue</div></a></div><div class="w-col w-col-6"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a7ba56f25b767852e929b_650x450-COVID-Sick-Child.jpeg" loading="lazy" sizes="(max-width: 479px) 96vw, (max-width: 670px) 97vw, (max-width: 767px) 650px, 48vw" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641a7ba56f25b767852e929b_650x450-COVID-Sick-Child-p-500.jpeg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641a7ba56f25b767852e929b_650x450-COVID-Sick-Child.jpeg 650w" alt="STAR Kids fails Texas Kids" class="img"/></div></div></div><div class="container"><div class="align-center w-row"><div class="pr-5 w-col w-col-6"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641d1501e897fc3688638177_sick-child%20(1).jpg" loading="lazy" sizes="(max-width: 479px) 96vw, (max-width: 670px) 97vw, (max-width: 767px) 650px, 48vw" srcset="https://cdn.prod.website-files.com/64120792638e43801da18424/641d1501e897fc3688638177_sick-child%20(1)-p-500.jpg 500w, https://cdn.prod.website-files.com/64120792638e43801da18424/641d1501e897fc3688638177_sick-child%20(1).jpg 650w" alt="Who does the STAR Kids Program effect" class="image-6 img"/></div><div class="w-col w-col-6"><h2>Who does STAR Kids effect?</h2><p>The STAR Kids Program is a Texas Medicaid managed care program that applies to disabled children and young adults aged 20 or below who have certain qualifications and meet certain criteria. Participation in the STAR Kids program is required for those who are 20 or younger, covered by Medicaid, and meet at least one of the following:<br/></p><div class="w-richtext"><ul role="list"><li>Receive Supplemental Security Income (SSI) for disabilities.</li><li>Receive Medicaid and Medicare for disabilities.</li><li>Live in a community-based intermediate care facility for individuals with an intellectual disability or related condition (ICF/IID) or nursing facility.</li><li>Receive services through the Medically Dependent Children Program (MDCP) waiver.</li><li>Receive services through the Youth Empowerment Services (YES) waiver.</li><li>Receive services through any of the following intellectual and developmental disability (IDD) waiver programs:</li></ul></div><ul role="list" class="indented"><li>Community Living Assistance and Support Services (CLASS)</li><li>Deaf Blind with Multiple Disabilities (DBMD)</li><li>Home and Community-based Services (HCS)</li><li>Texas Home Living (TxHmL)</li></ul></div></div></div></div><div class="section dark-blue"><div class="container"><div class="w-embed w-script"><a class="twitter-timeline" data-height="500" href="https://twitter.com/fragilechildTX?ref_src=twsrc%5Etfw">Tweets by fragilechildTX</a>
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275</div></div></div><div class="footer"><a href="/" aria-current="page" class="brand footer-brand w-nav-brand w--current"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/642f76d394a708f86ba892e3_ptfk%20logo%20white.png" loading="lazy" alt=""/></a><div class="footer-row"><div class="div-block-4 footer-col"><h4 class="heading-3">Message Us</h4><a href="mailto:[email protected]" class="contact-links whiteversion">[email protected]</a></div><div class="div-block-4 footer-col"><h4 class="heading-3">Call Us</h4><a href="tel:972.638.0348" class="contact-links whiteversion">972.638.0348</a></div><div class="div-block-4 footer-col"><h4 class="heading-3">Address</h4><a href="https://www.google.com/maps/place/United+States+Postal+Service/@33.0367629,-97.0637147,15z/data=!4m2!3m1!1s0x0:0xf3657753dc03458e?sa=X&ved=2ahUKEwiPzpPV2Jr-AhV1mmoFHSYvBkkQ_BJ6BAhcEAg" target="_blank" class="contact-links whiteversion">2300 Olympia Dr. #271480, <br/>Flower Mound, TX 75027</a></div><div class="div-block-4 footer-col"><h4 class="heading-3">Connect</h4><div class="nav-socal footer-version"><a href="https://twitter.com/fragilechildTX" target="_blank" class="link-block w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a34dd614c87b7f6cc1f38_Subtraction%202.svg" loading="lazy" alt=""/></a><a href="https://www.facebook.com/ProtectTXFragileKids" target="_blank" class="link-block w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a34dd45baae23b63afaec_icons8-facebook.svg" loading="lazy" alt=""/></a><a href="mailto:[email protected]" class="link-block last w-inline-block"><img src="https://cdn.prod.website-files.com/64120792638e43801da18424/641a34ddfbf80d2c976d20e6_Subtraction%201.svg" loading="lazy" alt="" class="last"/></a></div></div></div><div class="container"><div class="div-block-3"><div class="w-row"><div class="column-2 w-col w-col-6"><p>Protect TX Fragile Kids (PTFK) is a grass-roots, non-profit organization (501c4) founded and run by parents of medically fragile Texas children.</p><a href="/donate" class="bttn footer-cta w-inline-block"><div>Donate Today</div></a></div><div class="w-col w-col-6"><div class="w-row"><div class="w-col w-col-6 w-col-small-6 w-col-tiny-tiny-stack"><ul role="list" class="w-list-unstyled"><li class="list-item"><a href="/" aria-current="page" class="link w--current">Home</a></li><li class="list-item"><a href="/about-us" class="link">About Us</a></li><li class="list-item"><a href="/the-issue" class="link">The Issue</a></li></ul></div><div class="w-col w-col-6 w-col-small-6 w-col-tiny-tiny-stack"><ul role="list" class="w-list-unstyled"><li class="list-item"><a href="/volunteer-to-help" class="link">Volunteer</a></li><li class="list-item"><a href="/press" class="link">Press</a></li><li class="list-item"><a href="/contact-us" class="link">Contact Us</a></li></ul></div></div></div></div></div></div><div class="copyright-container"><div class="text-block-4">© 2023 <a href="/" aria-current="page" class="crlink w--current">Protect TX Fragile Kids</a>   |  <a href="/privacy-policy" class="crlink">Privacy Policy</a>  |  Website by <a href="https://pollenmedialab.com/" target="_blank" class="crlink">Pollen Media Lab</a></div></div></div>
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