April 30, 2025 Meeting Minutes - Medicaid Threats, HHSS Statement, Local Budgets, and PDA
- PALS
- Apr 30
- 6 min read
Updated: May 4
PALS Meeting Minutes
April 30, 2025 9:30 a.m.
Virtual Meeting using Zoom
Open Forum
Potential Threats to Medicaid in Pennsylvania The Pennsylvania Health Law Project, Pennsylvania Health Access Network, and J. Badger Consulting held an informative webinar on April 8, 2025 taking a look at Medicaid Threats in Pennsylvania: What's Happening and What You Can Do.
There has been a lot of discussion about federal proposals that would cut Medicaid funding and drastically impact healthcare access across our state, including for the over 3 million Pennsylvanians who rely on Medicaid.
During this critical and timely webinar, we heard from experts from PHLP, PHAN, and J. Badger Consulting as they discussed:
The importance of Medicaid for Pennsylvanians
How Medicaid is funded
Major federal threats facing the Medicaid program right now
How various proposals would affect you, your family, and your community
How to make your voice heard!
Here are the action steps you can take:
1. Call your member of Congress: Call 866-426-2631 to be connected to your Rep. in Congress or use this tool to find them using your address.
2. Share Your Story: Record your video story on Soapbox
3. Sign the Petition: Add your name to PHAN's Medicaid petition.
Health and Human Services Secretary News Conference on Autism Rates
Watch the April 16, 2025 News Conference held by the Unisted States Health and Human Services Secretary. You can access the full transcript below the video.
Advocacy Groups Speak Out on HHSS April 16, 2025 Announcement
Leading Autism Organizations, Disability Advocacy Groups, and Experts release joint statement on HHSS News Conference. Read the full statement, including the list of signees (17) and rolling endorsement list (currently 38).
FCASD Budget Shortfall
Read the April 24, 2025 Trib Live article 'Everything' is on the table to close $4.2 million shortfall in Fox Chapel Area School District budget by Michael Divittorio. Visit our February 2025 Meeting Minutes when participants ask FCASD's Director of Special Education and Pupil Services, Tim Mahoney questions about the state of the district's Special Education services and funding.
PDA: Pathological Demand Avoidance
Pathological demand avoidance (PDA) is a behavioral pattern where a person goes to great lengths to evade or disregard anything they perceive as a demand. This behavior is most commonly observed in individuals diagnosed with autism, however it is also noted in people not on the spectrum and is a form of neurodivergence itself. Individuals with PDA often react negatively to being instructed on how to act or what tasks to perform, even if these are routine aspects of daily life or are beneficial to them. The term "pathological" is used when this avoidance is extreme and disrupts daily functioning at home, school, or work. Resistance is often misinterpreted as deliberate defiance, but it is more accurately seen as stemming from anxiety and inflexibility.
6 core characteristics of PDA:
1.Resistance and avoidance of everyday demands, including those that are perceived by others as trivial or routine;
2. An overwhelming need to be in control and avoid being controlled by others, leading to extreme mood swings;
3. The use of social strategies as part of their avoidance;
4. Surface social communication abilities, despite difficulties with social interaction and understanding;
5. ‘Obsessive’ behavior, often focused on other people or can be focused on performance demands (due to acute anxiety);
6. Appearing more comfortable in role play and pretend than in reality, sometimes to an extreme extent.
Individuals who experience PDA may employ strategies that can be perceived as socially manipulative in order to evade demands. These strategies include making excuses, diverting attention, delaying tasks, issuing threats, and even feigning physical incapacity (“I can’t use my arms”). ~ Reframing Autism
What are demands?
In addition to more obvious direct demands like "Put your shoes on." "Stay here." "Sit down." "Would you like lunch?", there’s a whole raft of indirect and internal demands, including:
Time – time is an additional demand on top of the demand itself
Plans – advance planning may lead to increased anxiety as the time/date for ‘the plan’ nears, but equally the intolerance of uncertainty that is a key factor in PDA may make ‘spur of the moment’ activities tricky …
Questions – the expectation of being required to respond to a direct question can be disabling
Decisions – sometimes knowing a decision has to be made makes it a demand, or ‘options paralysis’ may set in if there are too many possibilities
Internal bodily demands – such as thirst or needing the bathroom
Thoughts/desires – internal feelings
Uncertainty – research from Newcastle University showed that intolerance of uncertainty is a significant factor in PDA, with PDA autistics needing to know and feel in control of what’s going on
Praise – this carries the implied expectation that the action will be carried out again or improved on next time, and so may not achieve the positive reinforcement that may be intended
Transitions – the demand to stop and switch what you’re doing and also the uncertainty around what may come next
Expectations – from others and of yourself
Sensory overload & sensory integration difficulties
Other people’s ‘energy’ and presence
Things we want to do – like hobbies, seeing friends or special occasions – so not just the things we might not want to do like housework or homework. ~ PDA Society
Communication strategies for parents and teachers.
1..Work on building a strong relationship rooted in trust.
2. Avoid using ‘demand words’ (e.g. “need”, “now”, “must”, “urgently”). Try to make indirect requests instead.
“Is it alright if we…”
“How do you feel about….”
“I wonder if we might…”
“Could you please help me? I wonder if you could…”
“Let’s see if there’s a way to….”
4. Depersonalise requests.
5. Give indirect praise.
6. Be consistent.
7. Be flexible (within reason). ~ Reframing Autism
Depending on the individual’s age and presenting symptoms, the following treatments may be indicated for the ongoing management of PDA:
Parent training (modified to the needs of the individual and their family)
Individual therapy (Cognitive Behavioral Therapy or Acceptance and Commitment Therapy)
Social Skills Training
Executive Function Skills Coaching
Educational consultation
Functional Behavior Assessment
Modified Applied Behavior Analysis (ABA)
Occupational Therapy
Physical Therapy
Speech Therapy
Psychopharmacological intervention
The most critical component of treatment for PDA is responsiveness. Avoidance, which is a key feature of the diagnosis, tends to fluctuate regularly. The individual, as well as their support teams, need to be aware of triggers, how to recognize upticks in anxiety, and how to modify treatment approaches accordingly. Regular team meetings and check ins are critical to the ongoing provision of treatment.
The goal of treatment for PDA is not to “fix” or eliminate the symptoms of PDA. PDA, like ASD and other diagnoses is a form of neurodivergence. The goal is to identify an individual's unique set of strengths and challenges, and partner with them to support autonomy and goal oriented behavior. This partnership can look different depending on the individual’s age and level of support needed; however, approaching treatment with empathy, respect, and anti-ableism practices are paramount. ~ MPG
If you are a parent of a child diagnosed with PDA, we welcome you to join our upcoming meeting. There are parents who regularly participate in our monthly virtual parent meetings looking for other parents to connect with on this topic.
Additional Resources:
PALS April Family Meet-Up
Dana Walker held a fun filled morning for all on April 12th for the PALS Family Meet-up. Held at the Sharpsburg Community Library, parents, kids, and sibs came together to enjoy a morning of board games and community. Fun was had by all! Read more here.
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Next Meeting: May 21, 2025 9:30 a.m. Virtual Meeting using Zoom.
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