We, the undersigned, are calling for immediate state and federal reforms to improve support for disabled individuals, medically complex children, and their families.

Families across the country face overwhelming barriers when trying to access Medicaid waivers, in-home support services and qualified care. Too many caregivers are left confused, misinformed, undertrained, and unsupported while caring for vulnerable individuals with significant medical, developmental, behavioral, and communication needs.

These reforms are necessary to protect families, improve care quality, and ensure equitable access to services.

 

We Are Calling For The Following Changes:

 

1. Mandate Clear Communication on Medicaid Waiver Eligibility & Services

 

All states should be required to provide transparent, standardized, and easy-to-understand communication regarding Medicaid waiver programs and disability-related services.

 

This should include:

 

Clear eligibility guidelines written in plain language

Accurate explanations of covered services and caregiver options

Timely waitlist updates and estimated timelines

Consistent information across agencies, case managers, and providers

Publicly accessible online resources updated regularly

Translation and accessibility accommodations for families with language or communication barriers

 

Mandatory training for caseworkers on waiver programs and family communication as well as mandatory continuing education. 

 

Proper communication can:

 

Prevent misinformation

Reduce delays in care

Increase participation in life-changing programs

Help families make informed decisions

Reduce unnecessary stress and burnout

 

No family should have to “fight” just to understand what help exists.

 

2. Require Standardized Behavioral & Disability Support Training for In-Home Caregivers

 

All in-home Personal Care Assistants (PCAs), respite workers, and caregivers serving individuals with autism, developmental disabilities, behavioral challenges, or communication impairments should complete foundational behavioral-support training prior to independently providing care.

 

We propose:

 

Mandatory completion of a behavioral support training course (similar to RBT training standards) 

Autism-specific and sensory-support education

Communication training for nonverbal and minimally verbal individuals

De-escalation and behavioral safety strategies

Trauma-informed caregiving practices

Ethical caregiving standards

CPR/ Emergency medical response certification

Ongoing continuing education requirements

 

Proper training improves:

 

Safety

Care consistency

Communication

Emotional regulation support

Family trust in caregivers

Outcomes for disabled individuals

 

Families deserve caregivers who are properly prepared to support vulnerable individuals with compassion, competence, and dignity.

 

3. Provide State-Funded Training Opportunities for Parents & Family Caregivers

 

Parents and family caregivers are often performing skilled nursing, behavioral support, therapy carryover, and crisis management with little or no formal training.

 

States should:

 

Offer free or low-cost certification programs

Provide paid caregiver training pathways

Allow parents to receive credentialed education without financial burden

Increase access to in-home support education in underserved communities

Families should not be forced to choose between learning how to safely care for their loved one and surviving financially.

 

Why This Matters

 

Disabled individuals and their caregivers deserve:

Transparency

Respect

Qualified support

Access to accurate information

Safer and more effective care systems

 

These reforms would strengthen families, reduce burnout, improve caregiver competency, and create better long-term outcomes for some of our most vulnerable community members.

 

It is time for states to stop expecting families to navigate complex systems alone.

We deserve clarity. We deserve support. And our loved ones deserve properly trained care.