State-by-State Guide: Medical Care for Complex Needs Kids

Introduction

Finding medical daycare and support for children with complex needs varies wildly by state. Your child's access to PPEC, Medicaid waivers, and services depends entirely on your zip code. This guide shows what every state offers, which have PPEC, and exactly what to do next.

Understanding Key Services for Medically Complex Children

Let's cut through the jargon first. You'll hear these terms constantly, so here's what they actually mean in plain English.

What Does "Medically Complex" Mean?

Your child is considered medically complex if they have multiple chronic conditions requiring ongoing medical care, specialized equipment, or care from multiple specialists.

Think: technology dependence (ventilators, feeding tubes), frequent hospital stays, need for skilled nursing, or regular appointments with three or more specialists. About 1-2% of kids meet this definition, though exact numbers vary because—surprise—states can't even agree on the definition.

PPEC: What It Actually Is

PPEC is medical daycare. That's it. That's what you need to know first.

Unlike regular daycare where staff call you if your kid has a fever, PPEC centers have licensed nurses who can manage ventilators, feeding tubes, and all that complex equipment keeping your child healthy. Kids attend during the day—usually 6 to 12 hours—while you go to work (or honestly, just take a breath).

Here's what makes PPEC different:

Services at PPEC include:

Skilled nursing and medical monitoring all day
Physical, occupational, and speech therapy
Specialized feeding and nutrition support
Medication administration
Medical equipment management
Developmental activities and learning programs
Caregiver training
Care team coordination

When medically necessary and prescribed by your doctor, Medicaid typically covers PPEC at zero cost to you. The catch? Your child needs to meet "institutional level of care" criteria—basically, their medical needs would qualify them for hospital care.

But here's the kicker: only 12 states have PPEC programs.

That means 76% of American families with medically complex kids have zero access to this service. None. No matter how desperately they need it.

If you're in Florida: Learn about Spark Pediatrics' PPEC program

Care Type	Location	Staffing	Socialization	Can You Work?
PPEC	Center	Nurses on staff	Group setting	Yes
Private Duty Nursing	Your home	One-on-one nurse	Isolated	Sometimes
Regular Daycare	Center	Childcare staff	Group setting	Won’t accept medically complex kids

Katie Beckett: The Income Loophole You Need

Katie Beckett programs let your child qualify for Medicaid based on their income—not yours.

This is huge. Without Katie Beckett, your family earning $65,000 might not qualify for Medicaid—but you also can't afford $800-per-day PPEC or $40-per-hour nursing. You're stuck in the middle, which is exactly where Katie Beckett's family was in 1981.

Her story led to federal legislation in 1982 that created this workaround. Now 42+ states offer it under names like "Katie Beckett," "TEFRA," or "Disabled Children's Program."

Your child needs to meet institutional level of care criteria (explained below). Application timelines? Tennessee reports 2-6 months; South Carolina reports no wait at all. Your mileage will vary.

Medicaid Waivers: Services Beyond Basic Coverage

Think of Medicaid waivers as the add-on package to basic Medicaid.

Regular Medicaid covers doctor visits, hospital stays, medications. Waivers pay for the stuff that keeps kids at home instead of in institutions: respite care, personal care assistants, home modifications, extra therapies, sometimes nursing.

Each state designs its own waivers with different names (because consistency would be too easy). Pennsylvania has multiple waivers—some with 19,000+ spots, others with 15,000+, and a special one for babies ages 0-2 with 6,500 spots.

Two critical things to know:

First, some waivers waive parental income (like Katie Beckett). Others don't—meaning middle-income families can't access them.

Second, many states have waitlists. Not short ones. Years-long ones.

Kansas has 13,400+ children waiting for waiver services. New Mexico has ~1,300 kids waiting. Always apply immediately—your spot in line matters.

Question for you: Are you on your state's waitlist yet? If not, we'll show you how below.

What "Institutional Level of Care" Really Means

Institutional level of care means your child's needs are serious enough for hospital or nursing home care.

Common indicators:

Technology dependence (vent, trach, feeding tube, oxygen)
Need for 24-hour medical supervision
Multiple daily skilled nursing tasks
High risk of medical crisis without monitoring

State reviewers assess this using medical records and doctor letters. They're asking: if you weren't providing this care at home, where would your child need to be?

Private Duty Nursing: The More Common Option

PDN is one-on-one nursing care in your home.

A nurse comes to your house for 4-24 hours at a time. Unlike PPEC's group daycare setting, PDN is home-based and isolated (your child doesn't get peer interaction).

Good news: Most states cover PDN even if they don't have PPEC.

Bad news: The nursing shortage is brutal. Pennsylvania, Rhode Island, South Dakota, Alaska, North Dakota, Oklahoma, and Alabama all document critical shortages. When agencies can't find nurses, you lose approved hours—forcing parents to quit jobs and provide 24/7 care themselves.

Many families use both PDN and PPEC when possible: nurses at night, PPEC during the day.

The PPEC Landscape: Which States Have Medical Daycare?

Ready for the disappointing geography lesson?

Only 12 states—24% of the nation—have licensed PPEC programs.

Let that sink in. Three-quarters of American families with medically complex children have zero access to medical daycare. Doesn't matter how much you need it. Doesn't matter if you'd pay for it (though most can't). Your state just doesn't have it.

States WITH Licensed PPEC Programs

Here are the lucky dozen:

Alabama - Multiple facilities statewide
Florida - Extensive network across the state
Georgia - Licensed facilities operational
Illinois - Including Almost Home Kids plus traditional PPEC
Louisiana - Licensed facilities available
Mississippi - Approved in 2022, facilities operational
Missouri - State-licensed, including Strictly Pediatrics KC area
Minnesota - State-licensed with regulatory oversight
North Carolina - PPEC services available
Pennsylvania - Called PECC here, licensed since 1999
South Carolina - Operational system
Texas - Called PPECC, licensed since 2015, extensive network

Notice anything? Mostly Southern and Southeastern states. Not coincidence—these states were early adopters who established licensing frameworks others haven't copied.

If you're in one of these 12 states, scroll down to your state profile for specific facility info and how to start the application process.

Florida Families, Listen Up:
Spark Pediatrics operates licensed PPEC centers in Florida. We provide skilled nursing care, therapies, and developmental programming so your child thrives while you work (or just breathe for a minute).
Schedule a tour →

States WITHOUT PPEC: The Hard Reality

Thirty-six states have no PPEC whatsoever.

If you live in Alaska, Arizona, Arkansas, California, Colorado, Connecticut, Delaware, Idaho, Indiana, Iowa, Kansas, Kentucky, Maine, Maryland, Massachusetts, Michigan, Montana, Nebraska, Nevada, New Hampshire, New Jersey, New Mexico, North Dakota, Ohio, Oklahoma, Oregon, Rhode Island, South Dakota, Tennessee, Utah, Vermont, Virginia, Washington, West Virginia, Wisconsin, or Wyoming—PPEC doesn't exist for you.

Period.

What this actually means for your daily life:

You can't drop your medically complex child at a center with nurses and go to work. Your options narrow to:

Private duty nursing at home (if you can find nurses, get authorization, and survive the shortage)
Quit your job for full-time caregiving (most common reality)
Cobble together respite hours from Medicaid waivers (typically 10-20 hours monthly—barely enough for grocery shopping)
Institutional care (nursing homes or hospitals—rarely appropriate for kids)

A Massachusetts study found families of medically complex kids become "air traffic controllers" for their child's services. Without PPEC, that burden crushes you.

Why doesn't your state have PPEC? Several reasons, all frustrating:

No legislation authorizing PPEC licensure
Never pursued Medicaid approval
Concerns about costs (shortsighted, since home-based care often costs more)
Nobody at the state level knows there's demand
No organized parent advocacy pushing for it

Some states are waking up: Ohio's House Bill 141 would establish PPEC and passed the House in June 2025. Now it's stuck in the Senate. (Call your Ohio senators if this affects you.)

What If My State Doesn't Have PPEC?

Let's be practical. Here are your actual options:

1. Private duty nursing at home
More available than PPEC. Medicaid covers it when medically necessary. You'll need doctor orders, institutional LOC determination, prior authorization. Expect 4-8 weeks for initial authorization. Finding actual nurses? That's the bigger challenge.

2. Family caregiving with waiver support
Apply for HCBS waivers providing respite care (temporary relief), personal care services, sometimes skilled nursing. Utah's waiver provides 13 hours monthly. Not enough for full-time work, but you can shower without worrying.

3. Complex care clinics
Children's hospitals in major cities run complex care clinics coordinating specialists. Minnesota's Gillette Children's and Mayo have these. They don't provide daily care but help manage the chaos.

4. Neighboring state reciprocity (rare)
Some states have Medicaid reciprocity agreements, but these typically don't cover long-term services. Rarely viable.

5. State advocacy
Contact legislators. Share your story. Join advocacy organizations (The Arc, Family Voices). Ohio's PPEC bill exists because parents persisted.

6. Relocation
Some families move to PPEC states. It's a difficult decision with significant implications (we'll dig into this later).

Stuck on what to do first? Book a free consultation to map out your specific pathway →

Limited Access: New York & Hawaii's False Promise

Even where PPEC technically "exists," access can be impossible.

New York has only TWO facilities for 19+ million people:

Daystar Kids in Rochester
One other (barely documented)

Hawaii has ONE facility:

Malana Malama in Ewa Beach, Oahu

If you're on the Big Island, Maui, Kauai, or anywhere beyond driving distance? You're out of luck.

Don't assume your state has adequate access just because one facility exists somewhere. Check if it's actually accessible given your location, their capacity, and whether they're accepting patients.

Alabama: Medical Care For Complex Medical Needs

PPEC: Yes - Multiple facilities statewide, Medicaid-covered

Medicaid: Managed care organizations

Katie Beckett: Yes - Available for income waiver

Waivers for Kids:

Children's Waiver (technology-dependent, ~150 spots)
Intellectual Disabilities Waiver
Personal Choices Waiver

Private Duty Nursing: Available but workforce shortage limits access

Early Intervention: Alabama Early Intervention System (birth-3)

Real Talk: A January 2025 DOJ investigation found kids with disabilities placed in nursing homes due to lack of community alternatives. That tells you something. Private duty nursing shortage forces some families toward institutional placement when home nursing disappears.

Start Here: Alabama Medicaid Agency - medicaid.alabama.gov

Alaska: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Fee-for-service (not managed care)

Katie Beckett: Yes - TEFRA program available

Waivers for Kids:

Children with Complex Medical Conditions (CCMC) - Ages 0-21, usually no waitlist
Intellectual/Developmental Disabilities (IDD) - Has waitlist

Private Duty Nursing: Available through Medicaid

Early Intervention: Infant Learning Program (birth-3)

What You'll Face: Rural and frontier geography creates extreme distance barriers. Healthcare needs 9,400+ new workers annually. If you live outside Anchorage, specialized services are basically inaccessible.

Start Here: Alaska Department of Health - health.alaska.gov

Arizona: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: AHCCCS entirely through managed care

Katie Beckett: Yes - Through Department of Economic Security

Waivers for Kids:

Division of Developmental Disabilities (DDD) waiver
Children's Rehabilitative Services (CRS) for care coordination

Private Duty Nursing: Available through AHCCCS plans

Early Intervention: AzEIP (birth-3)

What You'll Face: Arizona has one of the nation's worst nursing shortages, hitting rural areas hardest. Demand outpaces provider capacity across the state.

Start Here: AHCCCS - azahcccs.gov

Arkansas: Medical Care For Complex Medical Needs

PPEC: Yes - At least one facility (The Kidz Club)

Medicaid: ARKids First, fee-for-service

Katie Beckett: Yes - TEFRA-like waiver (may have sliding-scale family fee for higher incomes)

Waivers for Kids:

TEFRA-like waiver (unlimited slots, no wait)
Community and Employment Support (8,433 slots, waitlist 1,632)
Autism Waiver (ages 1-7, 270 slots)

Private Duty Nursing: Available for kids under 21 meeting specific criteria

Early Intervention: Arkansas First Connections (birth-3)

What You'll Face: Limited PPEC with only one known facility. Waitlists exist for some waivers.

Start Here: Arkansas Department of Human Services - humanservices.arkansas.gov

California: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Medi-Cal through county systems and managed care

Katie Beckett: Yes - Program available

Waivers for Kids:

HCBS Waiver for developmental disabilities
Regional Centers coordinate DD services

Private Duty Nursing: Available through Medi-Cal

Early Intervention: Early Start (birth-3)

What You'll Face: Most populous state with zero PPEC programs. That's... remarkable. Regional Center services have capacity limits. Geographic size creates huge urban/rural disparities.

Start Here: California DHCS - dhcs.ca.gov

Colorado: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Health First Colorado through managed care

Katie Beckett: Yes - Income waivers available, plus Medicaid buy-in for families earning <300% FPL

Waivers for Kids:

Children with Complex Health Needs (CwCHN) - Merged waiver as of 2025
Children's Extensive Support (CES) - DD, waives parent income
Children's Habilitation Residential Program
Brain Injury Waiver (all ages)

Private Duty Nursing: Available as state benefit

Early Intervention: Early Intervention Colorado (birth-3)

Honest Assessment: 2025 waiver consolidation means kids transitioning to new CwCHN waiver. No PPEC = home-based care only.

Start Here: Colorado HCPF - hcpf.colorado.gov

Connecticut: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: HUSKY Health through managed care

Katie Beckett: Yes - Waiver available

Waivers for Kids:

Katie Beckett Waiver
Autism Waiver
Individual and Family Support (DD)
Employment and Day Supports
Comprehensive Supports

Private Duty Nursing: Coverage status unclear (2004 report said no; verify current)

Early Intervention: Birth to Three (birth-3)

Honest Assessment: Historic lack of PDN coverage (check current status). No PPEC. HUSKY Health covers 1 in 3 Connecticut residents—that's a lot of people needing services.

Start Here: CT DSS / HUSKY Health - huskyhealthct.org

Delaware: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Delaware Healthy Children Program through MCOs

Katie Beckett: Yes - TEFRA-like pathway

Waivers for Kids:

DSHP-Plus - Recently added pediatric complex care services

Private Duty Nursing: Available (limited public info)

Early Intervention: Birth to Three (birth-3)

Honest Assessment: Small state, limited specialized pediatric infrastructure. DSHP-Plus recently expanded to kids, showing evolving services.

Start Here: Delaware DMMA - dhss.delaware.gov/dhss/dmma

Florida: Medical Care For Complex Medical Needs

PPEC: Yes - Extensive network statewide

Medicaid: Managed care (Managed Medical Assistance or Child Welfare)

Katie Beckett: Yes - Waives parental income for institutional LOC

Waivers for Kids:

Family and Supported Living Waiver (DD, waives parent income)
iBudget Waiver
Children's Medical Services Network for coordination

Private Duty Nursing: Available through managed care plans

Early Intervention: Early Steps (birth-3)

The Reality: Despite extensive PPEC, high demand means waitlists at some facilities. Managed care authorization can delay things. Florida's huge, so drive times vary wildly.

Start Here: Florida AHCA - ahca.myflorida.com

We're Here (Florida Families):
Spark Pediatrics provides PPEC services in Florida with nursing, therapies, and developmental programming. Safe environment where your child thrives while you work (or just catch your breath).
Ready to talk? Schedule a tour →

Georgia: Medical Care For Complex Medical Needs

PPEC: Yes - Licensed facilities operational

Medicaid: Georgia Medicaid/PeachCare through MCOs

Katie Beckett: Yes - Also called Deeming Waiver

Waivers for Kids:

Comprehensive Supports (COMP) - DD
New OPTIONS Waiver - DD
Both have extensive waitlists

Private Duty Nursing: Available when medically necessary

Early Intervention: Babies Can't Wait (birth-3)

The Reality: Multi-year waitlists for NOW and COMP waivers. Rural provider shortages. PPEC concentrated in metro Atlanta and urban areas.

Start Here: Georgia DCH - dch.georgia.gov

Hawaii: Medical Care For Complex Medical Needs

PPEC: Limited - ONE facility: Malana Malama (Ewa Beach, Oahu)

Medicaid: Med-QUEST through five managed care plans

Katie Beckett: Yes - Available through DHS

Waivers for Kids:

Intellectual/Developmental Disabilities (I/DD) Waiver

Private Duty Nursing: Available through Med-QUEST plans

Early Intervention: Early Intervention Section (birth-3)

The Reality: One facility on one island for the entire state. Neighbor island families have zero access. High cost of living = workforce shortages. Travel to Oahu for specialty care creates massive financial/logistical burden.

Start Here: Hawaii Med-QUEST - medquest.hawaii.gov

Idaho: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Healthy Connections (Basic and Enhanced Plans)

Katie Beckett: Yes - Waives parental income for qualifying kids

Waivers for Kids:

Children's Developmental Disabilities Program (1915(i) State Plan Amendment)

Private Duty Nursing: Covered but access limited in rural areas

Early Intervention: Infant Toddler Program (birth-3)

What to Know: Largely rural with big geographic barriers. Pediatric specialist shortages outside major cities. Long waits. Transportation nightmares for remote families.

Start Here: Idaho DHW - healthandwelfare.idaho.gov

Illinois: Medical Care For Complex Medical Needs

PPEC: Yes - Including Almost Home Kids (unique transitional model) plus traditional

Medicaid: HealthChoice Illinois through MCOs

Katie Beckett: Yes - Incorporated into waivers

Waivers for Kids:

Medically Fragile, Technology Dependent (MFTD) - Ages 0-21
Children's Support (ages 3-21, DD)
Children's Residential (24-hour support)

Private Duty Nursing: Available through MFTD waiver and state plan; workforce shortages impact access

Early Intervention: Early Intervention Program (birth-3)

What to Know: DD waivers have long waitlists (PUNS list, sometimes years). Shortage of qualified nurses and direct support professionals. Navigating MCOs and agencies is a maze.

Start Here: Illinois DHFS - hfs.illinois.gov

Indiana: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Hoosier Healthwise through managed care entities

Katie Beckett: Yes - Through waivers and Institutional Deeming for kids hospitalized 30+ days

Waivers for Kids:

Family Supports Waiver (FSW) - Entry waiver, limited services
Community Integration and Habilitation (CIH) - More intensive

Private Duty Nursing: Available through Medicaid

Early Intervention: First Steps (birth-3)

Real Talk: Limited waiver array compared to some states. FSW has budget caps. No PPEC = exclusive home-based reliance.

Start Here: Indiana FSSA - in.gov/fssa

Iowa: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Iowa Medicaid through MCOs

Katie Beckett: Yes - Waiver available

Waivers for Kids:

Children's Mental Health Waiver (ages 4-18)
HCBS ID Waiver (all ages)
Health and Disability Waiver (some kids)

Private Duty Nursing: Available through managed care

Early Intervention: Early ACCESS (birth-3)

Real Talk: Rural state, limited specialists outside major cities. Managed care transition created service disruption and authorization complexity.

Start Here: Iowa HHS - hhs.iowa.gov

Kansas: Medical Care For Complex Medical Needs

PPEC: No - Though Kansas City PPEC operates in KC area (verify coverage)

Medicaid: KanCare through MCOs

Katie Beckett: Yes - TEFRA program available

Waivers for Kids:

Physical Disability (PD) Waiver (4,257 active enrollees)
Intellectual/Developmental Disabilities (I/DD) - CRITICAL WAITLIST
Autism Waiver

Private Duty Nursing: Available through KanCare

Early Intervention: Tiny-k (birth-3)

Real Talk - This Is Bad: 13,400+ children on I/DD waiver waitlist as of 2024. "End the Wait" campaign calls this a civil rights crisis. Families wait YEARS. Rural areas face severe provider shortages.

Start Here: Kansas KDHE - kdhe.ks.gov

Kentucky: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Through five MCOs

Katie Beckett: Yes - Michelle P. Waiver waives parental income

Waivers for Kids:

Michelle P. Waiver (waives parent income)
Supports for Community Living (SCL) - DD
Model II Waiver (DD with intensive behavioral/medical needs)

Private Duty Nursing: Available through MCOs

Early Intervention: First Steps (birth-3)

What You'll Face: MCO authorization delays. Rural specialist shortages. DD waiver waitlists can be extensive.

Start Here: Kentucky DMS - chfs.ky.gov/agencies/dms

Louisiana: Medical Care For Complex Medical Needs

PPEC: Yes - Licensed facilities operational

Medicaid: Through MCOs

Katie Beckett: Yes - TEFRA program

Waivers for Kids:

New Opportunities Waiver (NOW) - DD
Residential Options Waiver (ROW) - DD
Children's Choice Waiver - Medically fragile

Private Duty Nursing: Available through managed care

Early Intervention: EarlySteps (birth-3)

Honest Assessment: Hurricane impacts affect healthcare infrastructure in some regions. Provider networks vary by region. PPEC may be concentrated geographically.

Start Here: Louisiana LDH - ldh.la.gov

Maine: Medical Care For Complex Medical Needs

PPEC: No - Zero licensed facilities

Medicaid: MaineCare (FFS and managed behavioral health)

Katie Beckett: Programs available (details limited publicly)

Waivers for Kids:

Section 21 (Comprehensive) - DD/autism, severe waitlist
Section 29 (Support) - DD/autism, severe waitlist

Private Duty Nursing: Covered (access details limited)

Early Intervention: Early Intervention for ME (birth-3, administered by Education Dept—unusual)

The Reality: Waitlists for waivers. No PPEC = huge gap. Rural state with provider shortages.

Start Here: Maine DHHS - maine.gov/dhhs

Maryland: Medical Care For Complex Medical Needs

PPEC: No traditional PPEC (Medical Day Care Services waiver exists but primarily 16+)

Medicaid: Maryland HealthChoice managed care

Katie Beckett: Incorporated into specific waivers

Waivers for Kids:

Model Waiver for Fragile Children (waives parent income)
Autism Waiver (waives parent income)
Medical Day Care Services (16+, does NOT waive parent income)
Community Pathways (new)

Private Duty Nursing: Available

Early Intervention: Maryland Infants and Toddlers (birth-3)

What to Know: Medical Day Care Services requires parent income consideration, limiting middle-income access. No traditional PPEC for young kids.

Start Here: Maryland Health - health.maryland.gov

Massachusetts: Medical Care For Complex Medical Needs

PPEC: No publicly funded PPEC

Medicaid: MassHealth through ACOs and MCOs

Katie Beckett: Yes - Through Community Case Management and Medically Complex Programs

Waivers for Kids:

Community-Based Medically Complex (CBMC) through DDS
Comprehensive Habilitation Services Network (autism)
Personal Care Attendant (PCA) Program
Complex Care Assistant (CCA) - Family members can be hired

Private Duty Nursing: Community Support Nursing (CSN) for 2+ continuous hours daily

Early Intervention: EI program through DPH (birth-3)

What to Know: 2022 study found families are "air traffic controllers" for services. Specialist shortage accepting MassHealth. Care concentrated in Boston metro. Prior auth barriers cause coverage disruptions. No PPEC despite being progressive on healthcare.

Start Here: MassHealth - mass.gov/masshealth

Michigan: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Healthy Kids and Children's Special Health Care Services (CSHCS - Title V for 2,700+ conditions)

Katie Beckett: Yes - Home Care Children's (HCC) waives parental income

Waivers for Kids:

Children's Waiver Program (CWP) - Under 18 with DD, waives parent income
Limited capacity: ~669 kids annually, priority weighting system

Private Duty Nursing: Available

Early Intervention: Early On (birth-3)

Real Talk: CWP limited capacity creates enrollment barriers. Priority system means eligible kids still might not get services. CSHCS has sliding-scale fee (waived for Medicaid/foster).

Start Here: Michigan MDHHS - michigan.gov/mdhhs

Minnesota: Medical Care For Complex Medical Needs

PPEC: Yes - Licensed system with state regulation

Medicaid: Minnesota Health Care Programs including MA

Katie Beckett: Yes - MA-TEFRA waives parental income

Waivers for Kids:

Community Alternative Care (CAC)
Community Access for Disability Inclusion (CADI)
Brain Injury (BI)
Developmental Disabilities (DD)

Private Duty Nursing: Available

Early Intervention: Help Me Grow Minnesota (birth-3)

What You'll Face: MCSHN direct funding discontinued may present challenges. Overall comprehensive system but access details vary. Need research on waitlist status.

Start Here: Minnesota DHS - mn.gov/dhs

Mississippi: Medical Care For Complex Medical Needs

PPEC: Yes - Approved 2022, facilities operational

Medicaid: Mississippi Division of Medicaid

Katie Beckett: Yes - Allows kids under 19 to qualify regardless of parental income

Waivers for Kids:

Intellectual/Developmental Disabilities (IDD) - Ages 0-21, waives parent income
Personal and Family Services (PFS) - Ages 0-21, waives parent income
HCBWE&D (some kids)

Private Duty Nursing: Available, approved alongside PPEC 2022

Early Intervention: First Steps (birth-3)

Honest Assessment: PPEC newly established (2022), so infrastructure still developing. Rural provider shortages and geographic barriers. Economic factors affect overall access.

Start Here: Mississippi Medicaid - medicaid.ms.gov

Missouri: Medical Care For Complex Medical Needs

PPEC: Yes - State-licensed, operational (Strictly Pediatrics KC area and others)

Medicaid: MO HealthNet for Kids

Katie Beckett: Yes - MOCDD/Sarah Lopez Waiver functions as TEFRA

Waivers for Kids:

MOCDD (under 18, DD, waives parent income)
Comprehensive Waiver (does NOT waive parent income—income cliff!)
Community Support (does NOT waive parent income)
Home and Community Support (does NOT waive parent income)

Private Duty Nursing: Available for kids under 21 needing 4+ hour blocks daily

Early Intervention: First Steps (birth-3)

The Reality: Only MOCDD waives income—others lock out middle-income families. PPEC eligibility mirrors PDN, limited to birth-6. Geographic concentration in metros.

Start Here: Missouri DSS - dss.mo.gov

Montana: Medical Care For Complex Medical Needs

PPEC: No - No info via public sources

Medicaid: Montana Medicaid through DPHHS

Katie Beckett: Yes - Through waivers waiving parental income

Waivers for Kids:

DD Waiver (0208/Comprehensive, waives parent income)
Big Sky Waiver (physical disabilities, waives parent income)

Private Duty Nursing: Covered for kids under 21; new Pediatric Complex Care Assistant (PCCA) Services launched September 2025

Early Intervention: Montana Milestones (birth-3)

What to Know: Rural with significant distance challenges. Study found 8.5% of Medicaid kids have medical complexity, with rurality/distance major factors. PCCA Services very new. Services through DD Program available at no cost.

Start Here: Montana DPHHS - dphhs.mt.gov

Nebraska: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Heritage Health with care management for medically complex

Katie Beckett: Yes - Disabled Children's Program waives parental income

Waivers for Kids:

Developmental Disabilities (DD) Waiver
Medically Handicapped Children's Program (MHCP - Title V through UNMC)

Private Duty Nursing: Available through Heritage Health

Early Intervention: Nebraska Early Development Network (EDN, birth-3)

Real Talk: Growing demand for special needs care, families struggling to find reliable services. Need research on specific waitlists and regional shortages.

Start Here: Nebraska DHHS - dhhs.ne.gov

Nevada: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Nevada Medicaid through DHCFP

Katie Beckett: Yes - TEFRA program available

Waivers for Kids:

HCBS Waiver for Intellectual/Developmental Disabilities

Private Duty Nursing: Available

Early Intervention: Nevada Early Intervention Services (birth-3)

What You'll Face: 2016/17 data: ~106,845 kids (15.9%) lived with special health care needs. Urban/rural divide creates access disparities.

Start Here: Nevada DHCFP - dhcfp.nv.gov

New Hampshire: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Through managed care entities

Katie Beckett: Yes - Available

Waivers for Kids:

Home and Community-Based Care for Children/Youth with DD
In-Home Supports for complex medical needs

Private Duty Nursing: Available

Early Intervention: Family-Centered Early Supports and Services (birth-3)

Honest Assessment: Small state but rural provider shortages. Limited public info; verify with state.

Start Here: New Hampshire DHHS - dhhs.nh.gov

New Jersey: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: NJ FamilyCare through MCOs

Katie Beckett: Yes - Through specific waivers

Waivers for Kids:

Global Options for Long-Term Care (GO-LTC)
Community Care Waiver (CCW) - DD

Private Duty Nursing: Available

Early Intervention: Early Intervention System (birth-3)

Honest Assessment: Densely populated, high demand creates capacity issues. MCO authorization delays. Cost of living affects workforce recruitment.

Start Here: NJ Human Services - nj.gov/humanservices

New Mexico: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Centennial Care 2.0 through three MCOs

Katie Beckett: Incorporated into waivers

Waivers for Kids:

Medically Fragile Waiver (ages 0-21, 1,300 on waitlist)
Developmental Disabilities (DD) Waiver
Mi Via Waiver (self-directed)

Private Duty Nursing: Available through Centennial Care

Early Intervention: Family Infant Toddler (FIT, birth-3)

The Reality - Critical Waitlist: ~1,300 children waiting for Medically Fragile Waiver. Nursing shortage everywhere. Rural distance/transportation nightmares. UNM documented multiple health equity challenges.

Start Here: New Mexico HSD - hsd.state.nm.us

New York: Medical Care For Complex Medical Needs

PPEC: Limited - Only TWO facilities: Daystar Kids (Rochester) and one other

Medicaid: Managed care and FFS; Health Homes Serving Children (HHSC) for intensive coordination

Katie Beckett: Incorporated into waivers

Waivers for Kids:

Children's Waiver (ages 0-17)
OPWDD Comprehensive Waiver (all ages)
Can only enroll in ONE waiver at a time

Private Duty Nursing: Available; state maintains online PDN directory

Early Intervention: Early Intervention Program (birth-3)

What to Know: Two facilities for 19+ million people. Absurd. Complex Care Act legislative discussions highlight gap forcing parents (especially moms) to quit careers. Urban areas have specialists; rural/upstate families travel hours. OPWDD waiver wait times substantial.

Start Here: New York State Health - health.ny.gov

North Carolina: Medical Care For Complex Medical Needs

PPEC: Yes - Services available (limited public facility documentation; verify with state)

Medicaid: NC Medicaid Managed Care through Tailored Plans, Standard Plans, and Medicaid Direct

Katie Beckett: Incorporated into waivers

Waivers for Kids:

Community Alternatives Program for Children (CAP/C) - Under 21, complex medical needs, capped enrollment through Medicaid Direct

Private Duty Nursing: Available as substantial, continuous skilled nursing; prior approval through NC Tracks (July 2024 transition)

Early Intervention: NC Infant-Toddler Program (NC ITP, birth-3)

Real Talk: CAP/C capped enrollment with historical waitlist (opened March 2017). Nursing shortage documented by UNC Health Workforce. Rural pediatric provider shortages. Transportation barriers.

Start Here: NC DHHS - ncdhhs.gov

North Dakota: Medical Care For Complex Medical Needs

PPEC: No - No facilities identified

Medicaid: Primarily FFS with Primary Care Case Management; Healthy Steps CHIP

Katie Beckett: Yes - Through DD and HCBS waivers

Waivers for Kids:

Medically Fragile Children Waiver (waives parent income)
Developmental Disabilities Waivers (waive parent income)

Private Duty Nursing: Available through ND Medicaid BUT managed care organizations do NOT cover PDN (major limitation)

Early Intervention: Early Intervention Services (birth-3)

What You'll Face: Rural with documented doctor shortage (July 2025). PDN not available through managed care = coverage gaps.

Start Here: North Dakota HHS - hhs.nd.gov

Ohio: Medical Care For Complex Medical Needs

PPEC: No operational, BUT House Bill 141 passed House June 2025 (awaits Senate)

Medicaid: Next Generation Medicaid managed care (January 2026); Healthchek EPSDT

Katie Beckett: Incorporated into waivers

Waivers for Kids:

Individual Options (DD, waives parent income)
Level One (DD)
SELF (DD with self-direction)
OhioRISE (children 0-20 with serious emotional disturbance, July 2022)
MyCare Ohio (dual-eligible, primarily adults)

Private Duty Nursing: Available; Ohio uses Acentra for utilization management; multiple hospital-based pediatric PDN programs

Early Intervention: Ohio Early Intervention (birth-3); Help Me Grow integrated

Honest Assessment: Study found 89% reported "poor access" to childcare requiring nursing. Significant nursing shortages especially rural. DD waiver waitlist exists. HB 141 shows legislative recognition but timeline uncertain.

Start Here: Ohio Medicaid - medicaid.ohio.gov

Oklahoma: Medical Care For Complex Medical Needs

PPEC: No - No centers identified

Medicaid: SoonerCare through MCOs

Katie Beckett: Yes - Program available

Waivers for Kids:

Developmental Disabilities Services (DDS) Waiver
In-Home Supports Waiver (IHSW, ages 3+)

Private Duty Nursing: Available through SoonerCare; limited 112 hours/week (16 hours/day max); family must provide some care unpaid; PDN not authorized solely for caregiver work/school

Early Intervention: SoonerStart (birth-36 months)

The Reality - This Is Critical: September 2024 National Academy of Medicine report called rural Oklahoma pediatric healthcare a "disaster in waiting." Persistent healthcare worker shortage. Inadequate payment worsens shortages. Rural areas severely underserved.

Start Here: Oklahoma OHCA - okhca.org

Oregon: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Oregon Health Plan through Coordinated Care Organizations (CCOs)

Katie Beckett: Yes - Three waivers waive parent income

Waivers for Kids:

Medically Involved Children's Waiver (MICW) - Ages 0-17, 212 spots, expired Dec 31, 2025 (verify renewal)
Children's Extraordinary Needs - Ages 0-17, 155 spots, 1,300 on waitlist
Children's HCBS - Ages 0-17, 11,942 spots
1915(k) Community Choice Program

Private Duty Nursing: Available

Early Intervention: Early Intervention/Early Childhood Special Ed (birth-3)

What to Know: One in five Oregon kids has special health care need. Children's Extraordinary Needs waitlist of ~1,300 significant. MICW expired December 2025—check renewal status. Waitlists: 52 with DD, 129 others.

Start Here: Oregon Health Authority - oregon.gov/oha

Pennsylvania: Medical Care For Complex Medical Needs

PPEC: Yes - Licensed as PECC under Act 54 of 1999, multiple facilities by county

Medicaid: PA Medical Assistance

Katie Beckett: Incorporated into waivers and Targeted Support Management

Waivers for Kids:

Consolidated (DD/ID/autism, 19,181 spots)
PFDS (same population, 15,432 spots)
Community Living (same, 15,432 spots)
Infant/Toddler Waiver (ages 0-2, 6,500 spots)
July 2022: Expanded ODP waiver to kids under 22 with DD due to medical complexity

Private Duty Nursing: Available; reimbursed $12.50 per 15-min unit, max 96 units/day; significant shortage

Early Intervention: Early Intervention Services (birth-5)

School Services: School-Based ACCESS Program (SBAP) - $2.5M federal grant 2024 to expand; March 2024 federal OIG found $551M improper claims

Real Talk: Major nursing shortage forces families to quit or consider institutional placement. Governor's 2025 budget includes nursing tuition assistance. Historical reports of kids in nursing homes due to lack of community alternatives. Federal oversight issues with school program.

Start Here: Pennsylvania DHS - pa.gov/agencies/dhs

Rhode Island: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: RIte Care through three MCOs (Tufts, Neighborhood, UnitedHealthcare)

Katie Beckett: Yes - Available

Waivers for Kids:

RI Comprehensive Demonstration Waiver (164 on interest/referral lists)

Private Duty Nursing: Pediatric PDN for kids under 21 with complex medical needs

Early Intervention: Early Intervention Program (birth-3)

What You'll Face - Critical Shortage: 1,284 RN shortage Q1 2025 due to low wages, burnout, retirements. October 2022: pediatric hospital beds 99% full. RI data: 30.4% of families frustrated getting services; 62% of high schoolers with disabilities felt sad/hopeless; 35% considered suicide. Transportation, navigation, childcare, waitlists are barriers.

Start Here: Rhode Island EOHHS - eohhs.ri.gov

South Carolina: Medical Care For Complex Medical Needs

PPEC: Yes - Operational system

Medicaid: Healthy Connections

Katie Beckett: Yes - Katie Beckett TEFRA Children (ages 0-18, no waitlist, waives parent income)

Waivers for Kids:

Pervasive Developmental Disorder (PDD) - Autism
Intellectual Disability/Related Disabilities (ID/RD)
Community Choices (primarily adults)

Private Duty Nursing: Available

Early Intervention: BabyNet (birth-3)

Honest Assessment: No waitlist for Katie Beckett is good news. Rural provider shortages and distance barriers remain.

Start Here: South Carolina DHHS - scdhhs.gov

South Dakota: Medical Care For Complex Medical Needs

PPEC: No state-funded programs; LifeScape operates Medically Complex Program

Medicaid: South Dakota Medicaid

Katie Beckett: Yes - Disabled Children's Program (TEFRA); monthly income <$2,982, resources <$2,000, parent income not counted

Waivers for Kids:

Family Support 360 (DD)
Assistive Daily Living Services (ADLS)
CHOICES (adults)
HOPE (nursing home-eligible, primarily 65+)

Private Duty Nursing: Covered for kids 20 or younger

Early Intervention: Birth to Three (birth-36 months)

The Reality - Critical Shortage: Projected ~1,900 nurse shortage, rural areas especially affected. Geographic limitations in rural state. Genetic outreach limited to Aberdeen, Pierre, Rapid City. Waitlist info not publicly available.

Start Here: South Dakota DSS - dss.sd.gov

Tennessee: Medical Care For Complex Medical Needs

PPEC: No state-funded programs documented

Medicaid: TennCare (1115 waiver)

Katie Beckett: Yes - Three parts:

Part A: Most significant needs, full Medicaid + $15K/year HCBS
Part B: At risk of institutionalization
Part C: Coverage ending due to increased parent income
Wait time: 2-6 months

Waivers for Kids:

Three 1915(c) waivers for ID: CAC, SD, SW
CLOSED to new enrollment July 1, 2016 (limited exceptions)

Private Duty Nursing: Through Katie Beckett and TennCare

Early Intervention: Tennessee Early Intervention System (TEIS, birth-3)

What to Know: Persistent healthcare worker shortage. Nursing shortage affects home health. 1915(c) waivers closed severely limits access. Tennessee Disability Coalition reported state failed to address access (2025). Special ed access issues documented.

Start Here: Tennessee TennCare - tn.gov/tenncare

Texas: Medical Care For Complex Medical Needs

PPEC: Yes - Licensed as PPECC since Jan 2015; extensive network (Spark Pediatrics, Little Haven, Little Stars, Tender Care, KC PPEC, others)

Medicaid: Texas Medicaid/CHIP; STAR Kids managed care for kids 20 and younger with disabilities

Katie Beckett: Incorporated into STAR Kids and waivers

Waivers for Kids:

Home and Community-Based Services (HCS) - I/DD
Texas Home Living (TxHmL) - I/DD

Private Duty Nursing: Available for medically complex kids

Early Intervention: Early Childhood Intervention (ECI, birth-36 months)

School Services: School Health and Related Services (SHARS) - Medicaid reimbursement

Real Talk: Despite extensive PPEC and comprehensive waivers, high demand creates capacity issues in some regions. Rural provider shortages. STAR Kids coordination helps but system complexity remains.

Start Here: Texas HHSC - hhs.texas.gov

Utah: Medical Care For Complex Medical Needs

PPEC: No specific centers documented

Medicaid: Utah Medicaid and CHIP

Katie Beckett: Incorporated into waivers

Waivers for Kids:

Medically Complex Children's Waiver (MCCW) - ~900 kids funded, waitlist enrollment by highest acuity
Technology Dependent Children
Community Supports (ID/related, some kids)
Community Transitions (some kids)
New Choices (some kids)

MCCW Eligibility: 18 or younger; 3+ specialty physicians; 3+ organ systems; not meeting age-appropriate ADL milestones; SSI designation or state determination

MCCW Services: RN case management, skilled nursing respite, routine respite (13 hours/month), personal attendant

Private Duty Nursing: Multiple pediatric PDN providers

Early Intervention: Baby Watch (birth-36 months)

What You'll Face: Waiver waitlists exist due to enrollment caps; apply early. Day services for DD available but specific medical daycare/PPEC not documented.

Start Here: Utah DHHS - dhhs.utah.gov

Vermont: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Vermont Medicaid / Dr. Dynasaur (CHIP)

Katie Beckett: Yes - Available

Waivers for Kids:

Developmental Disabilities Services Waiver

Private Duty Nursing: Available

Early Intervention: Children's Integrated Services (birth-3)

Honest Assessment: Small, rural state with limited specialized pediatric infrastructure. Provider shortages. Limited public details; verify with state.

Start Here: Vermont DVHA - dvha.vermont.gov

Virginia: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Virginia Medicaid through MCOs

Katie Beckett: Yes - Technology Assisted Waiver functions as Katie Beckett pathway

Waivers for Kids:

Technology Assisted Waiver
Community Living (CL) - DD
Family and Individual Supports (FIS) - DD, limited services

Private Duty Nursing: Available

Early Intervention: Infant & Toddler Connection (birth-3)

The Reality: DD waiver waitlists documented. Rural provider shortages. MCO authorization delays.

Start Here: Virginia DMAS - dmas.virginia.gov

Washington: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Apple Health through managed care

Katie Beckett: Yes - Medically Needy Program and specific waivers

Waivers for Kids:

Children's Intensive In-Home Behavioral Support (CIIBS) - DD with intensive behavioral needs
Core Services - DD
Multiple waivers through DSHS DD Administration

Private Duty Nursing: Available through Apple Health

Early Intervention: Washington State Early Support for Infants and Toddlers (birth-3)

What to Know: Despite progressive healthcare policies, no PPEC creates gap in care. Waitlists for DD services. Urban/rural divide in provider availability.

Start Here: Washington HCA - hca.wa.gov

West Virginia: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: WV Medicaid through MCOs

Katie Beckett: Yes - Program available

Waivers for Kids:

Intellectual/Developmental Disabilities (I/DD) Waiver
Traumatic Brain Injury (TBI, ages 3+)

Private Duty Nursing: Available

Early Intervention: West Virginia Birth to Three (birth-3)

Honest Assessment: Rural, mountainous state with severe geographic and transportation barriers. Healthcare workforce shortages. Economic factors affect access. Among highest poverty rates nationally impacts family resources.

Start Here: West Virginia DHHR - dhhr.wv.gov

Wisconsin: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: BadgerCare Plus

Katie Beckett: Yes - Waives parental income

Waivers for Kids:

Children's Long-Term Support (CLTS) - No waitlist (positive!)
Family Care Partnership (dual-eligible, primarily elderly)

Private Duty Nursing: Available

Early Intervention: Birth to 3 Program

The Reality: CLTS notable for NO WAITLIST—that's good news. Rural provider shortages. Winter weather creates additional transportation/access barriers.

Start Here: Wisconsin DHS - dhs.wisconsin.gov

Wyoming: Medical Care For Complex Medical Needs

PPEC: No

Medicaid: Wyoming Medicaid through managed care

Katie Beckett: Yes - Available

Waivers for Kids:

Comprehensive Waiver - DD
Supports Waiver - DD, more limited services

Private Duty Nursing: Available

Early Intervention: Part C Early Intervention (birth-3)

What to Know: Least populous state with extreme rural/frontier geography. Very limited specialized pediatric infrastructure. Families often travel to Colorado or neighboring states for specialty care. Provider shortages everywhere.

Start Here: Wyoming Health - health.wyo.gov

Taking Action: What You Actually Need to Do

Alright. You've got the information. Now what?

Your next steps depend on where you are and what your child needs. Let's break this down by situation.

If You're in a State WITH PPEC

Here's your roadmap:

Step 1: Get physician prescription

Your child's doctor (primary or specialist) must prescribe PPEC as medically necessary. The prescription should detail diagnoses, medical needs, why PPEC specifically is required, recommended hours, and duration.

Step 2: Contact your insurance

Medicaid managed care? Call the number on your card, ask for Prior Authorization.Fee-for-service Medicaid? Contact your state Medicaid agency directly. Request PPEC authorization. Ask what they need from you.

Step 3: Gather documentation

You'll need: hospital discharge summaries, current medications, equipment prescriptions, specialist notes (last 6-12 months), nursing assessments, developmental evaluations. Get this organized NOW—medical records take weeks to obtain.

Step 4: Research local facilities

Find licensed centers in your area. State licensing agencies list them. Call and ask: Do they accept your insurance? Do they have openings? What ages? What hours?

Step 5: Submit authorization

Your MCO or Medicaid will review for medical necessity. Typical timeline: 6-12 weeks for initial authorization. Some states faster, some slower.

Step 6: Follow up aggressively

Weekly calls to track authorization status. Stay in contact with the PPEC facility. If denied, request written explanation and appeal immediately (facilities can help with this).

Florida Families: Our enrollment team knows exactly what Medicaid reviewers need to see. We've done this hundreds of times. [Contact Spark Pediatrics to start your enrollment →]

PPEC Access Checklist:

Physician prescription obtained
Medicaid/insurance prior authorization submitted
Medical records gathered and organized
Local PPEC facilities identified and toured
Authorization follow-up scheduled (weekly)
Backup plan identified if authorization delayed

If Your State Doesn't Have PPEC

Real talk: Your options narrow significantly. But you still have options.

Option 1: Private duty nursing

Apply for PDN through Medicaid. Need: doctor orders, institutional LOC determination, prior authorization. Expect 4-8 weeks for initial authorization. Finding actual nurses? That's the bigger challenge.

Option 2: Katie Beckett if you're middle-income

Don't assume you won't qualify. Katie Beckett waives parent income—only your child's income matters (usually $0 or SSI). Contact your state Medicaid: ask for "Katie Beckett coordinator" or "TEFRA program." Timeline: 2-6 months typically.

Option 3: Get on waiver waitlists NOW

Even if the wait is years long, apply today. Position matters. Waivers provide respite, personal care, sometimes nursing. Won't replace full-time care but helps.

Option 4: Care coordination programs

Complex care clinics at children's hospitals coordinate specialists. Medical Home programs. Care management through managed care. These organize the chaos—don't provide daily care but keep you sane.

Option 5: Advocacy

Contact state legislators. Share your story. Join advocacy organizations (The Arc, Family Voices). Ohio's PPEC bill exists because parents persisted.

Option 6: Evaluate relocation (more on this below)

Need help mapping your options? [Book a consultation to discuss your specific situation and create an action plan →]

For Middle-Income Families

You're earning too much for regular Medicaid but can't afford $800/day care. Katie Beckett is designed for exactly this.

Don't let income assumptions stop you from applying. Katie Beckett waives parental income—your child's income (typically $0) is what counts.

Your pathway:

Contact state Medicaid: Ask for "Katie Beckett," "TEFRA," or "Disabled Children's Program"
Confirm your child's disability meets criteria (most require institutional LOC)
Gather documentation proving medical needs
Apply even if uncertain—let them determine eligibility
If approved, you access full Medicaid benefits (including PPEC if your state has it, PDN, waivers, therapies)

State-specific names to ask for:

Katie Beckett Program (most states)
TEFRA Program (Alaska, Kansas, others)
Disabled Children's Program (South Dakota, Nevada, others)
MOCDD/Sarah Lopez Waiver (Missouri)
Michelle P. Waiver (Kentucky)
Medically Complex Children's Waiver (Utah)

Contact info is in your state profile above.

When to Consider Relocation (The Uncomfortable Conversation)

Some families move to PPEC states. It's a massive decision with life-altering implications. If you are considering moving, here’s a list of states with the best complex medical care:

State	Why Families Choose It	What to Know
Florida	Extensive PPEC, Katie Beckett, no state income tax	High cost of living in some areas, hurricane prep, hot climate
Pennsylvania	PPEC access, Complex Care Resource Centers	Cold climate, some rural areas underserved, nursing shortage
Texas	Established PPEC since 2015, multiple facilities	Large state (significant travel times), hot climate, rural gaps
Minnesota	PPEC with strong waivers, comprehensive system	Cold climate, higher cost of living, winter challenges

Resources for Getting Started

Documentation Checklist (Start Gathering NOW)

Medical records take WEEKS to obtain. Start today:

Essential documents include things like Physician Letters, Hospital Discharge Summaries, and Equipment Prescriptions.

Read our full checklist here for a complete guide.

Organization tip: Create both physical binder AND digital folder. Scan everything. You'll submit these repeatedly for different programs.

Timeline Expectations (Be Realistic)

Understanding typical timelines helps you plan and reduces anxiety:

Katie Beckett approval: 2-6 months average

(Tennessee: 2-6 months; South Carolina: no wait)

PPEC initial authorization: 6-12 weeks

(Some states 4 weeks, others 16+. Incomplete docs delay everything.)

PPEC reauthorization: Every 6-12 months usually

(Start 4-6 weeks before current auth expires. Missing deadline = coverage lapse.)

Waiver enrollment: Highly variable

(Kansas: 13,400+ waiting. Wisconsin CLTS: No wait. Urgent need pathways may expedite.)

Private duty nursing auth: 4-8 weeks initial

(Finding actual nurses takes additional time—sometimes months.)

Critical strategy: Apply for EVERYTHING simultaneously. Don't wait sequentially. Better to have multiple approvals and choose than lose months waiting.

Authorization Reality:
"Getting initial PPEC authorization typically takes 6-12 weeks with perfect documentation. But the reauthorization cycle often catches families off guard—many states require renewal every 6-12 months, meaning you'll go through this process repeatedly."

National Organizations Worth Knowing

Family Voices (familyvoices.org)

Family-to-family support, state chapters, advocacy training

KidsWaivers.org (kidswaivers.org)

Comprehensive waiver info for all 50 states, regularly updated

The Arc (thearc.org)

Disability rights advocacy, state/local chapters, community programs

Parent to Parent USA (p2pusa.org)

Matches you with veteran parents who've been there

Your State's PTI Center

Every state has federally funded Parent Training & Information Center. Find yours: parentcenterhub.org/find-your-center

Summary: Accessing Care for Complex Medical Needs in Your State

Access to PPEC, Medicaid waivers, and support for children with complex medical needs shouldn't depend on your zip code—but it does.

You now know what every state offers, where the gaps exist, and what to do next. Only 12 states have PPEC programs. Katie Beckett exists in 42+ states but remains unknown to many who need it. Nursing shortages compound barriers even where programs exist on paper. Waiver waitlists trap thousands of children for years.

Start by contacting your state's Medicaid program. Don't wait—apply for everything simultaneously. Waitlist position matters.

If you're in Florida, we're here. Spark Pediatrics provides PPEC services with nursing, therapies, and developmental programming in a safe environment where children with complex needs thrive.

Schedule a tour →

You're not alone in this. Thousands of families face these same challenges. Together, through advocacy and persistence, we're working toward a future where every child has access to the care they need—regardless of zip code.

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