AUTISM financial RESOURCES

*Each underlined resource is hyperlinked for your convenience.

Figures from the Centers for Disease Control and Prevention (CDC) confirm that autism is a critical public health issue that deeply impacts millions of Americans. We know that access to resources and services is greater than ever. The Autism Hero Project (AHP) was founded on the idea that what we advocate for is a human's basic right to access the medical care and treatment they need to reach their full potential. More importantly, we believe that finances should NEVER be a barrier to access and take pride that we have become the financial bridge for parents by offering our Medical Insurance Grants in order to gain access to Applied Behavior Analysis (ABA) Therapy. Therefore, AHP will not rest until every child has access to ABA Therapy.

We know that in the State of Illinois, the Medicaid program does NOT typically cover ABA Therapy but the Illinois Department of Human Services (IDHS) does offer a program referred to as The Health Insurance Premium Payment (HIPP) . This is a resource eligible for Medicaid recipients to enroll and gain access to ABA and other Therapies.

Health Insurance Premium Payment (HIPP) Grant

HIPP is a program that helps to pay/reimburse health insurance premiums for some clients who have high medical insurance expenses.

Clients must cooperate with HIPP to be eligible for medical. Clients with high-cost medical conditions must provide information for any health plan that they:

are enrolled in; or
are eligible to enroll in but are not; or
may enroll due to loss of employment, layoff, or retirement (COBRA or conversion policy).

HIPP is limited to clients who have high-cost medical conditions, such as:

severe arthritis;
cancer;
heart ailment or defect;
liver disease;
kidney disease;
brain disease or disorder;
neurological disease or disorder (such as Autism);
diabetes;
AIDS;
organ transplant;
any other medical condition requiring high-cost ongoing medical treatment, such as pregnancy.

In order to be eligible, you must meet the following requirements:

Be currently enrolled in Medicaid,
Have private insurance (through an employer or private insurance.)
Be cost-effective (monthly expenditure on health costs must be 2.5x greater than your monthly premium. For example if your monthly private insurance premium is $400, the combined cost of all therapy and medical treatment would need to be $1,000/month or greater. With ABA therapy typically ranging from $90 -$120/hr, you would need to receive a minimum of 12 hours of therapy a month to be eligible. Most children meet that minimum requirement in one week, let alone a month.
Be able to show 6 months of "Explanation of Benefits" (EOBs) - the statements from your insurance showing the cost of care) demonstrating that they are cost-effective. (You can export all of your EOBs into an excel file format as evidence from your insurance provider's online dashboard.)

For families with Medicaid who do not have medical insurance available from an employer, you will need to first purchase a private medical insurance plan from an insurance broker by December 15th but it CAN NOT be The Affordable Care Act a.k.a ACA from The Marketplace healthcare.gov because technically ACA is considered another government insurance plan and you legally CANNOT have two government plans therefore it must be PRIVATE INSURANCE (attained through a private health insurance broker.) After receiving a minimum of 6 months of ABA therapy you may then be eligible to apply for HIPP because you must provide at least 6 months of EOBs to seek approval. To qualify, you will also need to submit the following items:

A complete application - Form DPA3459B (click to download), (If emailing, you must send the completed application as a PDF.)
A copy of your medical diagnosis, and a physician's statement describing the child's condition and diagnosis. This should be comprehensive so that the HFS/DHS has a clear picture of your child's medical needs. (If emailing, scan as a PDF.)
A copy of the FRONT and BACK of your medical insurance card. (If emailing, scan as a PDF.)
The address where premiums should be reimbursed. (If emailing, scan as a PDF.)
6 months of EOBs (To streamline this process, they will offer to access your account for you and download what they need if you are willing to provide them with your online portal login information, they can look up and download the information for you so you don’t have to scan and/copy all of it. But there is a very simple way you can do it yourself without giving them your personal credentials. You can just export into an excel.xlsx file all of your EOBs and send them the full excel file and that will suffice for their needs to verify what they need.
A copy of your insurance policy booklet (If emailing, scan as a PDF. The booklet explains what is covered by your insurance. This booklet can also be found in your online portal.)

The above items can be submitted via email (HIGHLY RECOMMENDED for quicker response time) to hfs.boc.hipp@illinois.gov or mailed to:

HFS/HIPP Unit

PO Box 19149

Springfield, IL 62794

FAX OPTION: 217-524-3047 (But you may be required to mail DPA3459B Application because they need original.

For more information on this grant, you can call the main office at (217) 524-8268 or email hfs.boc.hipp@illinois.gov.

When all necessary information is obtained, an eligibility decision can be made within 30 days. Decisions are sent to the family in writing. If eligible, HIPP pays the client's share of the health insurance premium directly to the insurance company, employer, union or client.

Once approved by HIPP you will need to submit at minimum the following items for reimbursement monthly (not limited to):

Copy of your monthly invoice. (A screenshot or picture will not suffice, you must send the invoice as a PDF if emailing.)
Evidence of medical insurance premium payment/paystub deduction. (A screenshot will not suffice, you must send as a PDF if emailing.)

P.U.N.S (Prioritization of Urgency of Need for Services)

is a database of Illinois infants, children, adolescents, and adults with developmental disabilities who have needs for developmental disability services or supports. The PUNS database helps us identify and plan for your immediate needs.

How do I sign-up for placement in the PUNS database? Click here

Individuals, along with their primary caregiver and/or guardian, must meet face-to-face with a pre-admission screener at their local coordination agency to fill out an Illinois PUNS registration form.

The individual must provide information on their medical condition, living arrangement and need for new, additional or different services. This will allow the pre-admission screener, on behalf of the State, to determine whether the person's needs are fully served, and if not, to categorize the need for developmental disabilities services. Your information will then be entered into the PUNS database.

You can also call the Developmental Disabilities Hotline at 1-888-DD-PLANS and 1-866-376-8446 (TTY) to assist you with the process.

Note: Completion of a PUNS form does not guarantee eligibility for services or the provision of services, but it does make sure that the State is aware of individual need for services.

What assistance can I receive if I sign up for PUNS?

In-home Supports
Respite Care
Job Coaches
Residential Living Arrangements
Adaptive Equipment
Other Supports

Even though resources are limited, the State works hard to make sure services are allocated as fairly and efficiently as possible, and they are continuously looking for new ways to increase access to assistance for those who are in need.

How do I find an Independent Service Coordination Agency in my area?

To find an Independent Service Coordination Agency in your area you can call the Division of Developmental Disabilities Hotline at

1-888-DD-PLANS and 1-866-376-8446 (TTY), or you can click here to find a local coordination agency in your area.

RESPITE

What Is Respite Care?

Respite programs offer an array of services to people with intellectual and developmental disabilities. These services are designed to help maintain individuals with developmental disabilities in the individual/family home by providing short term relief to primary caregivers.

Programs can range by providers but can include potential programs:

VOUCHER RESPITE

The purpose of the Voucher Program is to reimburse families for services that provide short term relief to the caregiver. This allocation of funds can be used for either direct care support staff, hired and paid by the family, or special recreation programs. The family is reimbursed on a monthly basis through direct deposit.

IN-HOME RESPITE:

The purpose of this program is to provide temporary relief for the primary caregiver. Under this program, the family provides a staff referral and a coordinator contacts the staff member to start the hiring process, complete required training, and provide payroll services. Once hired, staff can work with the individual for a set amount of hours per year (July 1- June 30).

RESIDENTIAL RESPITE:

Respite Program provides short-term supports to adults with developmental disabilities. Residential Respite, also known as Out-of-Home Respite, provides supervision and care for an up to 72 hour stay in a licensed group home in the community.

The family will work with the Respite Coordinator to complete the intake process. This service can be provided once per fiscal year.

GROUP RESPITE

Focuses on recreational activities and community outings.

Service Agencies vary by county, download the PDF list below and contact your specific agency to apply for services.

Healthwell Foundation

https://www.healthwellfoundation.org

Our Mission: To reduce financial barriers to care for underinsured patients with chronic or life-altering diseases.

The HealthWell Foundation is a leading independent non-profit dedicated to improving access to health care for America’s underinsured. When health insurance is not enough, we fill the gap by assisting with copays, premiums, deductibles and out-of-pocket expenses. In 2021, we awarded more than $818 million in grants through our Disease Funds, and since 2004 we have helped more than 727,000 patients afford essential treatments and medications. HealthWell is recognized as one of America’s most efficient charities — 100 percent of every dollar donated goes directly to patient grants and services.

We provide financial assistance to help with:

Prescription copays
Health insurance premiums, deductibles and coinsurance
Pediatric treatment costs
Travel costs
Behavioral health services

Our Vision: To ensure that no patient goes without health care because they cannot afford it.

Hours: M-F 9am-5pm EST
Phone: (800) 675-8416
Fax: (800) 282-7692

Email Support

Grant, Claims & Pharmacy Card-related questions:
grants@healthwellfoundation.org

Patient, Provider & Pharmacy Portal questions:
portal@healthwellfoundation.org

United Healthcare Children's Foundation Grant

Covers up to $1,500 in out-of-pocket medical costs (co-pays and deductibles), services and equipment.

Medical Services, Treatments and/or Therapies MUST be administered by a licensed medical professional.
Services or Treatments MUST be provided no more than 60 days prior to the date of your complete application. Don’t wait, apply right away! Grants are available for medical costs incurred within 60 days from the time UHCCF determines the application to be complete. It will then be good for one year following the month in which it is approved.
Medical Services and/or Purchased Equipment MUST be administered or purchased in the United States (excludes U.S. Virgin Islands, Puerto Rico, and other United States Territories)

Applicants must meet the following criteria to be considered for a grant:

Child must be 16 years of age or younger at the time of application.
Child must have a Social Security Number issued by the Social Security Administration. TIN numbers are not accepted.
Family must not exceed maximum eligible family income as documented on IRS Tax Form 1040.

$55,000 or less for a family of 2
$85,000 or less for a family of 3
$115,000 or less for a family of 4
$145,000 or less for a family of 5 or more

Primary coverage for the child must be by a commercial health plan, either through an employer or individually purchased. Secondary insurance through Medicaid or CHIP is permissible.
Child is under the care of a licensed medical professional and family is applying for treatments/equipment/services prescribed by a Medical Doctor (M.D.), Doctor of Osteopathic Medicine (D.O.) or Doctor of Audiology (Au.D.) for hearing conditions.

Click here for Required Documents

Click here to complete the application

Autism Care Today Grant

Autism Care Today grants up to $5,000 per family and are designed to provide access to individuals and families affected by Autism Spectrum Disorders. Grant payments will be made directly to pre-approved treatment providers, assessors or materials vendors.

If you have additional questions that are not answered on this page, please contact the grants department at 818-340-4010 or 877-9ACT-TODAY (877-922-8863), or email to grants@act-today.org.

State and Federal Disability Benefits

Supplemental Security Income (SSI)

Supplemental Security Income, or SSI, is a monthly government payment through Social Security which is designed to support people who are aged (65 and older), blind, or disabled. Individuals with autism may be eligible to receive SSI to help support them financially.

Information on this and other programs can be found at www.ssa.gov. You can also review the following links which further explain the SSI program for children and adults with disabilities, family financial criteria, how to apply, and more.

About SSI
What You Should Know Before You Apply for SSI Disability Benefits for a Child
Starter Kit to apply for SSI for a Child
Find much more information and answers to frequently asked questions about Social Security benefits.

Social Security Disability Insurance (SSDI)

Social Security Disability Insurance is another financial benefit through Social Security. This payment is available for adults who have a disability that began prior to age 22. SSDI can be considered a “child’s” benefit because it is paid on a parent’s Social Security earnings record.

For a disabled adult to become entitled to this “child” benefit, one of his or her parents:

Must be receiving Social Security retirement or disability benefits; or
Must have died and have worked enough to qualify for Social Security.

These benefits also are payable to an adult if he or she is disabled at age 18, and if they received dependent’s benefits on a parent’s Social Security earnings record prior to age 18. We make the disability determination using the disability rules for adults. SSDI disabled adult “child” benefits continue as long as the individual remains disabled. Your child doesn’t need to have worked to get these benefits.

For more information on SSI and SSDI, see this booklet called Benefits for Children with Disabilities.

You can find many more SSDI resources and information here.

Chicago Autism Project

Some of the programs they offer include:

Scholarships and Grants – This program offers support for life-changing therapeutic services, such as speech therapy, ABA therapy, through grant and scholarship programs.

Key Information for Applicants:

You must have a child with a current autism diagnosis
Your child must be between 14 months and 5 years old
You must reside in the greater Chicago area
You can apply for up to $10,000 in scholarships (or the amount of your insurance out-of-pocket maximum)

To apply click here: CAP Grant

Other things they offer:

Diagnostic Evaluations – It is not uncommon for families to be placed on waitlists for diagnostic evaluations that are several months long. We partner with clinicians to help families receive diagnostic evaluations sooner.

Therapeutic Services – They work to increase access to high-quality therapy services for children with autism. We partner with providers in the community that offer a range of therapeutic services specializing in services for children with autism.

Key Information for Applicants:

You must have a child with a current autism diagnosis
Your child must be between 14 months and 5 years old
You must reside in the greater Chicago area
You can apply for up to $10,000 in scholarships (or the amount of your insurance out-of-pocket maximum)

CHICAGO AUTISM NETWORK

The application window for 2023 Therapy Assistance Grants are currently closed. Decisions will be announced via email to applicants no later than November 15th, 2022. The next round of applications will be August 15-October 1, 2023

Who is eligible for a Therapy Assistance Grant?

Anyone living in Illinois with a current autism diagnosis. Grantees are selected by our Board of Directors based on clinical and financial need. Households cannot receive a grant 2 consecutive years, so 2022 grantees must wait to apply until the fall of 2023 for the 2024 grants. While we consider families of all income levels, priority will be given to families with clinical and financial need.

How is grant money distributed?

Grant money is distributed directly to service providers, up to the amount awarded. If you are approved for out-of pocket therapy costs, we will pay your therapy provider directly for approved therapy costs. If you are approved for help with insurance premiums, we will make monthly payments to your insurance provider up to the specified amount.

Which therapies are approved for coverage?

Therapy Assistance Grants will cover therapies that have proven effectiveness including the following:

Speech Therapy
Occupational Therapy
Physical Therapy
ABA (Applied Behavior Analysis) Therapy
Dialectical Behavior Therapy
Cognitive Behavioral Therapy
Educational/Developmental Therapy
Social Skills Group
Therapeutic Day School
Pharmacotherapy
Other Psychotherapy

Other forms of therapy are not covered under Therapy Assistance Grants. We also do not cover any fees (late fees, lunch fees, registration fees, etc.)

Looking for a Diagnostic Evaluation (Without the long wait takes private insurance only)

The Goldman Center of Chicago

Contact 773-998-8500

IL ABLE - SAVINGS FOR PEOPLE WTH DISABILITIES

IL ABLE “Achieving a Better Life Experience” accounts give people with disabilities and their families greater financial independence while preserving benefits. A high-quality, low-cost IL ABLE savings and investment account can be opened by an eligible individual, or Authorized Individual, at any time, no matter what state you live in. For more information, visit https://illinoisable.com/

Resources for People with Disabilities

Illinois Department of Human Services, Division of Rehabilitation Services

https://ides.illinois.gov/jobs-workforce /programs/disabilities.html

The Division of Rehabilitation Services is the state's lead agency serving individuals with disabilities. DRS works in partnership with people with disabilities and their families to assist them in making informed choices to achieve full community participation through employment, education, and independent living opportunities. If you have a disability, the Illinois Division of Rehabilitation Services may be able to help you find a job.

Useful Links:

IDES is an equal opportunity employer and complies with all state and federal non-discrimination laws in the administration of its programs.

Auxiliary aids and services are available upon request to individuals with disabilities. Contact the Equal Opportunity Officer for IDES as (312) 793-9290 or TTY (888) 340-1007.

The ARC of Illinois

https://www.illinoislifespan.org/resource-toolbox/

The Arc of Illinois is committed to empowering persons with disabilities to achieve full participation in community life through informed choices.

Children’s Services

Children’s Services and PUNS Services for children with developmental disabilities are accessed primarily through the special education services provided by local school districts.

Early Intervention

Early Intervention services are available in Illinois for children from birth to age three who demonstrate a developmental delay or who are diagnosed with a developmental disability.

Special Education Services

Special Education Services are available to students with disabilities from age 3 until they graduate or until the day before their 22nd birthday, as long as the need for services is indicated in the Individualized Education Plan or IEP.

Early Childhood Special Education

Early Childhood Special Education serves children ages three to five who have developmental delays or disabilities. These programs are part of the special education continuum operated by the public schools of Illinois.

Transition

Before a family looks into any pre-designed program of transition for their child, it is important to have a vision of the child’s future.

Adult Services

Services for adults with developmental disabilities are accessed through Independent Service Coordination (ISC) agencies.

Government Benefits Program

Government Benefit Programs are an integral part of the service system for people with disabilities. Although they can be complicated, it is important to understand how to access and utilize these benefits.

Advocacy Groups

Advocacy is a very broad category that includes organizations that support people with disabilities and their families in a variety of different ways.

Recreation and Leisure Providers/Programs

Recreation is an important part of life for people of every age. Children need opportunities to meet and play with their peers and adults need opportunities to participate in activities they enjoy to lead full lives.

Assistive Technology

Any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of individuals with disabilities is considered to be assistive technology(AT).

Abuse and Neglect

The Illinois Department on Aging (IDoA) handles all reports of alleged abuse against persons with disabilities aged 18-59 who live in domestic (non-institutional) settings.

Respite Services

The National Respite Locator Services of ARCH National Respite Network describes respite as follows: “Respite, a break for caregivers and families, is a service in which temporary care is provided to a child or adult with disabilities, or chronic or terminal illnesses, and to persons at risk of abuse and neglect.

Special Needs Future Planning for Benefits, Legal and Financial Issues

People with disabilities and their families need to understand government benefits that may be available and how those benefits are impacted by other financial circumstances, such as work.

The Arc of Illinois Fact Sheets

NEW! Fact Book ¡Recién publicado!! Lanzamiento de Folleto de Hojas Informativas de The Arc en Español Community Living Options for Older Adults with Disabilities Connect the Dots Transition Tool Connect the Dots Transition Tool – Spanish Considering a Move To, or Within, Illinois? Considering a Move to, or Within, Illinois? – Spanish DDD v DRS... Read more »

Moving to the Community

Making the transition from a state operated developmental center (SODC) to a home in the community can be a challenge for the individual making the move as well as for their guardian and close family members and friends.

Pulled from PUNS – What’s Next?

You have been selected from the PUNS list – what’s next? The PUNS list is simply a waiting list for in Illinois for adult developmental disability support services funding through the Medicaid Home and Community Based Waiver program.

individuals with disabilities education act (idea)

https://sites.ed.gov/idea/

Welcome to the U.S. Department of Education’s Individuals with Disabilities Education Act (IDEA) website, which brings together IDEA information and resources from the Department and our grantees.

Whether you are a student, parent, educator, service provider, or grantee, you are here because you care about children with disabilities and their families and want to find information and explore resources on infants, toddlers, children, and youth with disabilities.