Understanding the Frustration
If you’re a parent of a child with autism in the Hampton Roads region, you’ve likely experienced the confusion and frustration that comes with trying to access financial support for necessary services. Navigating the maze of Medicaid waivers can feel like a full-time job—complex paperwork, conflicting information, long waiting lists, and a system that seems designed to discourage rather than help.
This frustration is valid and shared by many families across Norfolk, Virginia Beach, Suffolk, and surrounding areas. But with the right information and guidance, the Virginia Medicaid waiver system can become a valuable resource to help your family access vital autism services.
Virginia’s Medicaid Waivers for Autism Services
Virginia currently has three primary Developmental Disability (DD) waivers that can serve children with autism and developmental disabilities, plus one medical‑needs waiver:
1. Community Living Waiver (CL)
This is the most comprehensive waiver, designed for individuals with significant support needs. The CL Waiver provides the full range of services, including:
- Group day services
- Group home residential options
- Individual supported employment
- Personal assistance services
- Respite care
- Assistive technology
- Crisis support services
- Environmental modifications
- And many more services for individuals with autism and intellectual disabilities
2. Family and Individual Support Waiver (FIS)
This waiver offers similar services to the CL Waiver but at a lower intensity level and funding cap. Services include:
- In-home support services
- Individual supported employment
- Personal assistance
- Respite care
- Companion services
- Crisis support
- Environmental modifications
- Assistive technology
3. Building Independence Waiver (BI)
Primarily for adults (18+) who can live without 24‑hour supervision, the BI Waiver funds:
- Shared living supports
- Supported employment
- Independent living skills training
While most children will use CL or FIS, knowing about BI is helpful for future transition planning.
4. Commonwealth Coordinated Care Plus Waiver (CCC Plus)
This waiver serves individuals with medical or nursing needs, including some children with autism who have medical support needs. Services may include:
- Personal care services
- Respite care
- Private duty nursing
- Adult day health care
- Personal emergency response systems (PERS), including medication‑dispenser options
- Environmental modifications
Note: CCC Plus does not have a waiting list; slots open as people qualify.
Eligibility Requirements for Hampton Roads Families
To qualify for Medicaid waivers in Virginia, your child must meet both diagnostic and functional eligibility criteria:
Diagnostic Eligibility
Your child must have a documented diagnosis of:
- Autism Spectrum Disorder
- Intellectual Disability, or
- Developmental Disability with significant support needs
This diagnosis must be made by a qualified professional such as a developmental pediatrician, neurologist, psychiatrist, or licensed psychologist.
Functional Eligibility
In addition to the diagnosis, your child must:
- Meet the functional criteria as assessed on the Virginia Individual DD Eligibility Survey (VIDES)
- Demonstrate significant support needs in multiple areas of daily functioning
- Require the level of care typically provided in an institutional setting
Financial Eligibility
For children under 18, one of the most important aspects of Medicaid waivers in Virginia is that they are based solely on the child’s income and resources, not the parents’. This means that many middle and upper-middle-class families can qualify for services despite household income.
The Application Process for Local Residents
The application process for Medicaid waivers in Hampton Roads follows these steps:
1. Contact Your Local Community Services Board (CSB)
- Chesapeake: Chesapeake Integrated Behavioral Healthcare – (757) 547-9334
- Norfolk: Norfolk Community Services Board – (757) 756-5600
- Virginia Beach: Virginia Beach Department of Human Services – (757) 385-0600
- Suffolk: Western Tidewater Community Services Board – (757) 758-5106
- Hampton/Newport News: Hampton-Newport News Community Services Board – (757) 788-0300
2. Request a Screening
Ask specifically for a “Developmental Disability Waiver Screening.” Make it clear that you are interested in being screened for the DD waivers, not just assessed for services.
3. Complete the Assessment
The CSB will conduct a comprehensive assessment using the VIDES tool to determine functional eligibility.
4. Determination of Priority Status
If found eligible, your child will be assigned a priority level from 1-3, with Priority 1 being the most urgent need. This priority level affects waiting list placement.
5. Waiting List Placement
Unfortunately, most eligible individuals are placed on a waiting list due to limited waiver slots. The statewide DD‑waiver waiting list stood at 15,486 individuals as of December 2024.
6. Medicaid Application
While on the waiting list, complete a Medicaid application through your local Department of Social Services. Remember, for children under 18, only the child’s income and resources are counted.
7. Service Planning
If and when a waiver slot becomes available, you’ll work with a support coordinator to develop a person-centered service plan.
Common Mistakes to Avoid When Applying
1. Not Being Specific Enough About Support Needs
- Be thorough and detailed when describing your child’s challenges and support needs
- Document all assistance required, even on “good days”
- Bring examples and documentation to assessment meetings
2. Misunderstanding the Different Waivers
- Don’t assume all waivers offer the same services
- Request screening specifically for DD waivers, not generic Medicaid services
- Understand which waiver best matches your child’s needs
3. Giving Up Due to Long Waiting Lists
- Apply as early as possible, even if the wait seems long
- While waiting, apply for any available emergency slots or alternative programs
- Regular check-ins with your support coordinator can sometimes identify faster pathways
4. Not Appealing Denials
- If denied, you have the right to appeal the decision
- Request the specific reasons for denial in writing
- Consider seeking advocacy support for the appeal process
5. Failing to Update Information
- Report any significant changes in your child’s condition or family situation
- Update contact information whenever it changes
- Request reassessment if your child’s needs increase
Local Resources in Hampton Roads for Application Help
Several local organizations can provide guidance through the waiver application process:
Norfolk/Virginia Beach Area
- Endependence Center: Offers benefit counseling and advocacy – (757) 461-8007
- Hope House Foundation: Provides guidance on Medicaid waivers – (757) 625-6161
- Families of Autistic Children in Tidewater (FACT): Offers parent support and information – (757) 422-2040
Peninsula Area
- The Arc of the Virginia Peninsula: Provides advocacy and information – (757) 896-6461
- Peninsula Agency on Aging: Offers benefit counseling – (757) 873-0541
Suffolk/Western Tidewater
- Western Tidewater Community Services Board: Provides case management – (757) 758-5106
Realistic Timelines for the Process in Virginia
Understanding realistic timelines helps manage expectations:
- Initial Screening: Up to 30 days from first contact to completed assessment
- Eligibility Determination: 2-4 weeks after assessment completion
- Waiting List: Currently, the average wait times are:
- Priority 1: 1-3 years
- Priority 2: 5-7 years
- Priority 3: 8-10+ years
- Medicaid Application Processing: 45-90 days
- Service Initiation: 30-60 days after waiver slot assignment
These timelines can vary based on individual circumstances and changes in state funding.
Services Typically Covered Through These Waivers
When your child receives a Medicaid waiver, they may access various autism-specific services:
Therapeutic Services
- Applied Behavior Analysis (ABA): Intensive behavioral intervention
- Speech Therapy: Communication and language development
- Occupational Therapy: Sensory integration and life skills
- Physical Therapy: Motor skills development
Support Services
- Respite Care: Temporary caregiving relief
- Personal Care Assistance: Help with daily living activities
- Companion Services: Social support and community integration
- In-Home Support: Assistance within the family home
Equipment and Modifications
- Assistive Technology: Communication devices, specialized software
- Environmental Modifications: Home adaptations for safety and accessibility
- Therapeutic Equipment: Sensory tools and adaptive devices
Employment and Day Support
- Day Support Programs: Structured activities and skill development
- Supported Employment: Job coaching and workplace assistance
- Community Engagement: Activities that build community connections
Finding Your Path Forward
While the Medicaid waiver system in Virginia presents challenges, it remains one of the most comprehensive funding sources for long-term autism services. The key is persistence, thorough documentation, and utilizing available advocacy resources.
Even while waiting for a waiver slot, families can often access some services through:
- School-based services through IEPs
- Private insurance coverage for some therapies
- Community programs and sliding-scale options
- Non-profit organizations that provide assistance
Remember that your persistence in navigating this complex system not only benefits your child but also helps bring attention to the need for improved access to services for all families affected by autism in Virginia.
The Norfolk Autism Center is here to provide personalized guidance through the waiver application process. Our staff understands the local systems and can help you navigate the complexities specific to Hampton Roads. Contact us at (757) 777-3229 or visit our center at 152 Burnetts Way, Suffolk, VA 23434 for individualized support.
