PART- Parents and Allies for Remarkable Texans

PART- Parents and Allies for Remarkable Texans STAND WITH US to KEEP our Texas State Supported Living Centers (SSLCs) for the intellectually & developmentally disabled OPEN!

Why are families with a loved one with IDD and profound autism denied or delayed placement in a Texas ICF (SSLCs and pri...
04/27/2026

Why are families with a loved one with IDD and profound autism denied or delayed placement in a Texas ICF (SSLCs and private ICFs) when it is an entitlement if the person qualifies?

"As the M.A. state House of Representatives begins debate today on the Fiscal Year 2027 state budget, we are gaining bipartisan support for our proposed amendments asserting a right of persons with intellectual and developmental disabilities (I/DD) to placements at the Wrentham and Hogan Intermediate Care Facilities (ICFs).

This is a right that not only aligns with federal law, but is consistent with the state’s policy of encouraging “self-direction” among clients in planning and choosing their services.

When it comes to Wrentham and Hogan, not only does the Department of Developmental Services (DDS) not inform disabled individuals and their families of the existence of those facilities, but the Department implies they don’t have a right to placements there."

Illustration: Pixabay by geralt

https://cofarblog.com/2026/04/27/bipartisan-support-grows-for-our-budget-amendments-to-save-wrentham-and-hogan/

Hidden in Plain Sight: The True Cost of IDD Services and the Case for Restoring Choice.The report estimates that in Mass...
04/27/2026

Hidden in Plain Sight: The True Cost of IDD Services and the Case for Restoring Choice.

The report estimates that in Massachusetts, the true cost exceeds $4.56 billion when hidden expenses are included, and developmental disabilities (IDD) are far higher—and more complex—than what official state budgets show, while also exposing systemic failures in care delivery and oversight.

Core Finding: The Cost Is Understated
Massachusetts reports about $3.26 billion in IDD spending
The report estimates that the true cost exceeds $4.56 billion when hidden expenses are included.

These hidden costs come from:
* Medicaid (MassHealth), Social Security, and housing programs
* Police, emergency rooms, and crisis response systems
* Municipal services and taxpayer subsidies

BOTTOM LINE: Large portions of spending are “off-budget” and invisible to policymakers.

Structural Problem: A Fragmented System

The report argues the current system—primarily Home and Community-Based Services (HCBS)—is:

* Unbundled (services split across multiple providers)
* Poorly coordinated
* Lacking clear accountability

This fragmentation leads to:
* Gaps in care
* Inconsistent service quality
* Families forced to coordinate care themselves

Hidden Costs of Fragmentation

Because services are disconnected:
The report estimates that the true cost exceeds $4.56 billion when hidden expenses are included, and developmental disabilities (IDD) are far higher—and more complex—than what official state budgets show, while also exposing systemic failures in care delivery and oversight.
* Abuse and neglect reporting systems absorb high case volume
* Costs are spread across agencies and not tracked in one place

RESULT: The system appears cheaper than it actually is—but functions less effectively.

Impact on Individuals and Families

Despite high spending:
* Many individuals do not receive adequate care
* High-needs individuals are often placed in settings not designed for them

Families experience:
* Service gaps
* Crisis cycles

The report highlights the “cliff” when individuals age out of youth services and lose support.

Key Comparison: HCBS vs. ICF/IID

The report contrasts:
* HCBS (community-based, fragmented model)
* ICF/IID (facility-based, integrated model with 24/7 care)

It argues:
* ICF/IID provides centralized care, clinical oversight, and consistency
* HCBS relies heavily on external systems and less-trained staff
* Cost comparisons are misleading unless all hidden costs are included
* Policy Concern: Lack of Real Choice
* Access to ICF/IID settings is often restricted or denied
* Families are effectively steered into HCBS, regardless of need

This:
* Limits options
* Shifts high-acuity individuals into less suitable settings
* Inflates costs and risk

The report concludes that the IDD system is:

* More expensive than reported
* Fragmented and inefficient
* Lacking transparency and accountability
* Failing many high-needs individuals

The key question is not: WHICH MODEL IS CHEAPER?

BUT rather:

Are current investments producing safe, effective care—and real choice for families?

The report calls for:

* A balanced system (both HCBS and ICF/IID)
* Restored access to all levels of care
* Better oversight and coordination
* Greater transparency in spending

https://savingwrenthamandhogan.org/

Why? Why do families not receive timely information about admission criteria for placement at a SSLC? Texas Health and S...
04/25/2026

Why?

Why do families not receive timely information about admission criteria for placement at a SSLC?

Texas Health and Safety code 593.052

Why is jail not labeled the most restrictive setting instead of the SSLCs?

https://www.keranews.org/news/2026-04-23/he-needs-care-not-a-cage-man-with-intellectual-disabilities-transferred-from-tarrant-county-jail?fbclid=IwdGRjcARZ7G9leHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeA_Ad2_k9R0Lq19_YbRBIIRIGMmL9n1eY4fzUJD75kHwqXhfXC1Eqv6G4iBc_aem_KM5bJu3ojkZXDVWHXlJvBw

Shawn Fraraccio, 26, was moved to a living facility in Mexia on April 14 after a demand for this transfer from his mother and the public.

04/25/2026
Perfectly said.
04/24/2026

Perfectly said.

While my own mother was a shining example of caring for others, I wish she had also reserved some time for self care. 👩🏻...
04/22/2026

While my own mother was a shining example of caring for others, I wish she had also reserved some time for self care. 👩🏻‍⚕️ 🩺

There’s a certain kind of strength many women carry that rarely gets questioned. We push through. We power on. We ignore the signals—because someone always needs us more.

A few days ago, I was admitted to the hospital for an unexpected appendectomy.

For over a month, I had been dealing with pretty intense back pain. But as someone who has lived with chronic kidney stones my entire life, I didn’t think much of it. The pain felt familiar. Predictable. Something I knew how to handle. So I did what I’ve always done—I pushed through. I managed it quietly, showed up where I needed to, and told myself it would pass.

But it didn’t.

Four days ago, I finally went to the ER expecting confirmation of what I already believed—that I had another kidney stone and just needed to ride it out. Instead, the CT scan told a very different story. Yes, there was a kidney stone—but on the opposite side of where I was feeling pain. What I was actually dealing with was appendicitis, and I needed surgery immediately.

Within hours, I was transferred and in the operating room. And in an unexpected twist, the surgeon also repaired a large abdominal hernia I didn’t even know I had.

Here’s the part that sits a little heavier for me—this wasn’t just a misread of symptoms. This was a pattern. A pattern of minimizing, of rationalizing, of putting my own body at the bottom of the priority list.

And I know I’m not alone in this—especially among moms, and even more so among special needs moms.

When you spend years—decades—being the constant for someone else, you learn to override your own needs almost instinctively. You tell yourself you don’t have time, that it’s probably nothing, that you just need to get through the week. And somewhere along the way, “pushing through” starts to feel like strength.

But sometimes, it’s not strength. Sometimes, it’s neglect.

I’ve spent 23 years parenting Skyler—advocating, managing, anticipating, and showing up in ways that don’t allow for many pauses. And while I’ve learned so much about resilience and unconditional love, I’m realizing I still have work to do when it comes to extending that same care inward.

Because your body keeps score. And it will eventually demand your attention—whether it’s convenient or not.

We tend to treat the word “selfish” like it’s something to avoid, but maybe we’ve been defining it all wrong. Maybe being “selfish” sometimes looks like making the doctor’s appointment sooner, resting before you’re completely depleted, taking pain seriously instead of explaining it away, or saying “I need a minute” without guilt. Taking care of yourself isn’t in conflict with taking care of others—it’s what sustains it.

I wish I could wrap this up with a neat message about how I’ve learned my lesson and everything will be different moving forward, but that wouldn’t be honest. I’m still a work in progress. Still someone who defaults to pushing through. Still someone who needs reminders to slow down. Still someone learning that strength doesn’t always look like endurance.

Sometimes, it looks like stopping.

So if you’ve been ignoring something—physical or emotional—consider this your nudge. Pay attention. Check in. Don’t wait until your body forces you to. You don’t have to earn rest. You don’t have to justify care. And you don’t have to break before you’re allowed to slow down.

04/22/2026
04/14/2026

It's been awhile. Mostly because I feel like we have just been existing, going through the motions. I have this constant, aching worry that I am not making your life big enough, but the consistent reminder that you are perfectly content with a bag of spicy chips, a fountain drink with lots of ice, and a ride to Casey's. I'm in this weird place, because lots of kids your age, they're thinking about what's next, driving cars, falling in love, getting away from here ... and well, you're not. Or maybe you are. I don't know. And that's hard. The not knowing. At almost 15, I know you have deep thoughts and a body that has betrayed you. If I could be anything , maybe I'd be a mind reader, so I could help you out of there. I think, I think I'm in an angry, "it's not fair" phase, and a hole with no ladder right now, because I'm just so pi**ed off that you've been robbed of things that should be so seemingly ordinary. And April sucks, it sucks because everyone is telling me I should celebrate everything about the one thing that has robbed you of the ordinary and the extraordinary. And you know what, I love you my sweet boy, but I think you'd agree with me, and you'd want me to tell everyone that it sucks most days. Being overlooked, and left behind, sucks. Everyone is moving ahead, and we're driving to Casey's, again. I'll never stop driving you to Casey's, I will do whatever in my power brings you joy. I just wish I could do more.

If you're ready to begin planning for your child’s future, Consolidated Planning Group offers informative webinars desig...
04/13/2026

If you're ready to begin planning for your child’s future, Consolidated Planning Group offers informative webinars designed to help families navigate important decisions. Register today to learn more about available resources and planning strategies.

You can also visit their YouTube page to search and view past webinars covering a variety of helpful topics.

THANK YOU ATTORNEY RACHEL DICKISON!! On April 15, Consolidated Planning Group hosted a webinar titled, "Wills, Trusts & Guardianships with Attorney Rachel Dickison."

Consolidated Planning Group is so pleased to bring another important webinar to you in partnership with Attorney Rachel Dickison.

WATCH IT HERE: https://youtu.be/DcIifip72yE

04/07/2026
04/05/2026

Just one of thousands of families trying to care for a loved one with Profound Autism. Those with Profound Autism require 24/7 care.

This care includes trying to protect the person from injuring themselves and other family members, staying awake 24 hours, providing medical care to sustain life and all the other activities of daily life to keep their child alive.

Parents can’t live forever, wouldn’t it make more sense to have more appropriate services available so the family can help their person transition to the 24/7 care that they require?

04/05/2026

1 million people with profound autism in the U.S. where only 86,000 are receiving care at our federally regulated Intermediate Care Facilities.

CMS National Data Highlights:
Congregate / Institutional Care (ICF/IID): 86,184 IDD individuals served in congregate care; 5.7% of all LTSS users; cost: $4.7 billion nationally. Serves individuals with the highest levels of need.

Home and Community-Based Services (HCBS): 8.4 million users; total spending $145.9 billion. Over 2 million individuals with autism, IDD, or developmental disabilities; $34.9 billion spent on IDD-related HCBS services for all acuity levels.

CMS data show the funding and policy pendulum has already shifted heavily toward HCBS, while congregate care serves a small but critical population. CMS has also recognized that institutional and congregate care remain necessary for individuals with the most significant needs.

Sources: CMS, 2023 LTSS User Characteristics Brief; CMS, 2023 LTSS Rebalancing Brief

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PO Box 40096
Austin, TX
78704

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