SPG 4 Denovo

As we walked this journey from our initial CP diagnosis to an eventual HSP SPG4 diagnosis there have been several key people we have come to rely on. As you begin this process try and find providers that you can work with and talk to. You are not taking a short trip to “recovery” but rather looking for partners to strengthen and maximize potential in your child. At this time we have:

Orthopedics	For help with Orthotics, braces, and referrals to OT and PT
Neurology	For guidance on therapy, future imaging and resources
Physical Medication and Rehabilitation (PM&R)	For Botox and other focused treatments for spasticity
Occupational Therapist	For daily tasks of living in the face of spasticity
Physical Therapist	Our own personal trainer.  Need is able to motivate and recognizes the need for strength training and can make it seem like play
Speech Therapist
Early Intervention	Using play and games has helped immensely in keeping up with the other kids in school
Social Work (from our Regional Center)	Navigating insurance and resources
Parents	Home exercise, getting rid of sharp edges, steps, adding railings in bathrooms, etc.

If you have a resource not listed, please share. Below is a summary of support agencies typically available to provide resources.

Developmental & Medical Support Agencies by State: Summary Table

State / D.C.	Primary Agency / Program	Focus & Coordinating Structure	Typical Eligibility Thresholds
Alabama – Wyoming & D.C. (all states)	State-designated Developmental Disabilities Service Agency (DV/DD/IDD services) and IDEA Part C Early Intervention programs	Supports children with intellectual or developmental disabilities from birth through adulthood; Early Intervention covers ages birth–3	Often requires documented diagnosis (e.g. autism, CP, ID) and evidence of substantial functional limitation; early intervention requires developmental delay per standardized metrics
Most states	Part C Early Intervention via state health or education departments	Nationwide federal mandate; services like PT/OT/speech provided prenatally–age 3	Developmental delay (usually 25–33% delay), diagnosed condition, or established medical eligibility
Many states	Title V Maternal & Child Health / Children with Special Healthcare Needs	Offers medical care coordination, therapy referrals, specialized equipment	Primarily medical needs; may include income-based eligibility or condition-based qualification
States with Medicaid waivers	Medicaid HCBS Waivers for Children with DD	State-administered programs (e.g. “IDD waiver”) offering in-home supports, nursing, respite	Often requires functional limitation and clinical eligibility; financial criteria vary; waitlists common
Some states	State Pediatric Medical Programs / Rare Conditions Initiatives	Special disease-specific networks (e.g. cystic fibrosis, metabolic disorders)	Diagnosis-based; some use income criteria, others medical severity only