Understanding How to Fund Autism & Developmental Disability Services in the Mahoning Valley

One of the most common challenges families face after an autism or developmental delay diagnosis is learning how to navigate the many systems that provide and fund services.

At Community Behavior Consulting, we believe in having open, honest conversations about funding. The reality is that comprehensive care is expensive, and access is shaped by how different funding systems operate.

We often explain it this way: There are three “pots” of money available to support a child with autism or developmental disabilities. You never want to rely on just one and you may have to work hard to access all three. But together, they provide the strongest foundation of support for your child.

Let’s walk through each system, along with the pros, limitations, and important considerations.

Pot #1: Medical Insurance

Autism and developmental delays are medical conditions that require rehabilitative treatment. This wasn’t always recognized. Before the Affordable Care Act (ACA), many rehabilitative services, especially for children with developmental conditions, were not consistently covered. Thankfully, the ACA changed that by eliminating pre-existing condition exclusions and expanding coverage.

Today, medical insurance typically covers: ABA therapy, speech therapy, occupational therapy, physical therapy, counseling, and other behavioral health services.

However, families who have commercial insurance often face significant barriers: High deductibles, high out-of-pocket costs, and confusing coverage rules

Because ABA is time-intensive, families may meet their deductible quickly. We encourage families to know their deductible, co-pays, and out-of-pocket maximums and to build a realistic payment plan. Grants and private assistance programs may help cover medical costs, but they are not guaranteed and often require documentation and applications. There is an important consideration with medically necessary ABA: it is medical treatment, not education. It targets the symptoms of autism, it does not replace everything a child would get during their time in school.

A note on Medicaid: In Ohio, Medicaid can cover ABA, but access is difficult and many providers cannot rely on only taking Medicaid due to reimbursement limitations. Waitlists for children with primary Medicaid insurance may be longer. For families, it may be ideal to have commercial insurance as primary and Medicaid as secondary, but changing income limits and eligibility rules make this increasingly challenging.

Some children qualify for OhioRISE, a program for youth with complex behavioral needs. OhioRISE offers care coordination and Medicaid, primarily for behavioral health services. OhioRISE functions similarly to a waiver program in how Medicaid eligibility is determined. When a child qualifies for OhioRISE, access to Medicaid is based on the child’s income and assets, not the family’s income or resources, which can open important doors to care for many families. However, Medicaid eligibility through OhioRISE is not automatic. Children must first complete a CANS (Child and Adolescent Needs and Strengths) assessment, which is used to determine whether they meet the clinical criteria for the program. This assessment ensures that OhioRISE services are reserved for youth with the most complex behavioral health needs who require coordinated, intensive supports. Families in our local area may also find it helpful to contact Cadence Care Network, which serves as a local care management entity for OhioRISE and can provide guidance, referrals, and support throughout the process.

Pot #2: Educational Services & Scholarships

All children with disabilities are entitled to educational services. This can occur through public school special education services and private providers using an Ohio Scholarship, such as the Autism Scholarship or Jon Peterson Scholarship. These scholarships are educational vouchers, not medical funding. In lieu of having your child receive their free, appropriate public education or “FAPE” through their local school district, you can use scholarship dollars for your child’s educational services at a provider that accepts the scholarship. Scholarships cannot be used to pay medical deductibles or co-pays.

Using education funds for personal medical expenses is not allowable. When using a scholarship, the child is not entitled to FAPE in the same way they are in a public school. The private provider can implement some or all of the IEP goals provided, they can modify goals, or they can add goals. It is important to talk to your scholarship provider and review which parts of the IEP will be implemented and how. For example, some scholarship providers may provide more speech therapy than is indicated in the IEP and some providers may not have a speech therapy provider. By using the scholarship, parents are opting for private educational services that are often different from what is provided by public school districts in the IEP.

Pot #3: County Board of Developmental Disabilities Waivers

This is often the hardest funding source to access, because traditional Medicaid waiver programs, like those offered by the County Boards of Developmental Disabilities exist as an alternative to placement in an institution. This allows those with developmental disabilities more independence over care in their home and community-based setting. 

For a person to become eligible for waiver services, they have to meet a DD level of care and waiver-Medicaid criteria. The level of care criteria is determined through the Board of DD. The Medicaid criteria is determined through the nursing home unit at the Department of Job and Family Services.

The first step to this: If already connected to the Board of DD, make a request of your SSA to complete a wait list assessment. If your SSA feels as though you have unmet needs that can be met by community resources, they may be reluctant to refer your child to have a wait list assessment screen completed.

If not already connected to the Board of DD, a person must call in and request to be assessed for services. An assessment called a County of Origin Eligibility Determination Instrument (COEDI) or Ohio Eligibility Determination Instrument (OEDI) will be completed based on age to determine if the disabled person qualifies for services. The process, however, will still be the same in order to ultimately gain access to waiver services. It is the need to have a wait list assessment tool completed.

Waivers are a way for persons with chronic needs to receive their care at home or in a group home setting. As a result, waivers offered at the County Boards of Developmental Disabilities offer waiver clients a full Medicaid benefit as well as other services such as respite, supports and services, adult day programs, and more. Once an individual has a waiver, they automatically qualify for Medicaid. Income is based on the disabled persons income and assets and are not a result of the combined family resources. While waivers are a federally funded program, there is a dollar match that has to be at the state level for all enrolled, so oftentimes, waivers are limited by county funding. They are not an entitlement like education. Often, waivers are prioritized for adults, emergencies, and families without natural support, which the waitlist assessment tool will determine. Even if your child does not yet have a waiver, it is essential to be connected with your county board in case future needs arise.

If your family is interested in exploring waiver services, the first step is to request a waitlist assessment through your local County Board of Developmental Disabilities. This assessment helps determine your child’s eligibility and placement on the waiver waiting list.

One important thing for families to know is that a child cannot be enrolled in two waiver programs at the same time. This means a child cannot be on both an OhioRISE waiver and a Developmental Disabilities (DD) waiver simultaneously. However, this does not mean families must choose only one system of support. A child may still receive other services from the County Board of DD while participating in OhioRISE, and similarly, a child on a DD waiver may continue to receive additional services through community providers such as Cadence Care Network.

Finally, there are some grants and fundraising efforts your child may qualify for. While grant-funded programs cannot provide as much assistance as insurance or Medicaid-funded programs, they can still help reduce the financial burden related to your child’s care. Some grant programs offer one-time assistance, while others may provide limited support to families over a period of time.

• Operation Search and Help: https://operationsearchandhelp.org/

• Autism Care Today: https://www.act-today.org/apply-for-grant/

• UnitedHealthcare Children’s Foundation: https://www.uhccf.org/apply-for-a-grant/

  
  

Each system offers different support. Together, they create the strongest safety net for your child. Yes–it means more professionals, more meetings, and more coordination.However, more support is always better than less, or even none at all. If navigating these systems feels overwhelming, seek help from social workers, case managers, and care coordinators.

And one final piece of advice we offer to every parent: If you encounter someone in any system who is unhelpful–do not give up. You can request a different person to work with, switch to written communication, or escalate concerns. Never walk away from an entire system because of one difficult experience.