Attention Magazine October 2018

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“Help! How can I get an ADHD assessment when my insurance doesn’t provide adequate coverage? Many doctors in my area don’t take new patients or don’t participate in my insurance plan or they charge way too much. I’m not rich enough to pay for it myself.”

“How can I get my child evaluated and treated for ADHD? It’s too expensive and we can’t afford it. Can somebody help me—please?”

CHADD RECEIVES QUERIES LIKE THESE ALL TOO OFTEN. Insurance companies generally pay for standard doctor visits, but many do not pay for lengthy evaluations. Psychological testing generally takes hours and can cost thousands of dollars. Many doctors assess without testing or lengthy interviews. But even if a doctor is very knowledgeable about ADHD, a twenty-minute visit is usually not adequate.

Just how common is the affordability problem? Recently, ADDitude magazine conducted a comprehensive online survey of more than 600 US participants. Here are some of their findings.

● More than 16 percent of the respondents reported that the costs of managing ADHD exceeded 10 percent of their family’s income.

● 65 percent of survey participants, with and without insurance, said the costs for care had affected their ability to treat their ADHD.

● Only about 8 percent said their plans paid 100 percent of costs for medication and treatment.

● Just over 7 percent said their plans paid none of these costs.

● Nearly 25 percent of the survey participants who had insurance said their plans paid for less care in 2017 than previously.

● More than 50 percent said they had been limited by insurance in taking the medication they wanted.

● 23 percent said it had greatly affected that ability, limiting, and sometimes eliminating, treatment options. A 2012 study published in the Journal of the American Academy of Child and Adolescent Psychiatry estimated the annual costs of caring for ADHD at up to $2,720 for children and $4,120 for adults. The ADDitude survey suggests that these costs were understated, especially when the costs included non-medical strategies such as coaching, tutoring, non-prescription supplements and vitamins, neurofeedback, etc., not to mention costs incurred with common coexisting conditions such as depression, anxiety, sleep disorders, and substance abuse.

● On average, respondents estimated $3,509 in annual expenses for “nonmedical” costs that they associated with ADHD care.

● 84% said their household was living with one or more diagnosis (such as anxiety, depression, or learning disabilities) in addition to ADHD.

When it comes to finding low-cost evaluations and treatment for ADHD, there is good news and bad news. The good news is that there are many resources available. The bad news is that you will have to do the research to find them.

To help you find affordable evaluations and treatment when insurance coverage is lacking and fees are too high, the members of Attention‘s editorial advisory board put their heads together. They compiled these 19 tips out of their collective wisdom and experiences.

TIP #1

If you are an adult with ADHD, or a parent surrounded by chaos, this project can be a real challenge. This is a good time to get creative. Perhaps a friend or relative could help you with this research in exchange for something they need done. Don’t be afraid to ask for help. Many people feel that the support they receive from other individuals or parents is the strongest help they have. Take advantage of organizations such as CHADD and its National Resource Center on ADHD, ADDA, NAMI, Learning Disabilities Association, and so forth. These national groups offer valuable support and education, as well as useful educational materials such as books, audiobooks, articles, podcasts, and brochures. They provide services (in-person and online) through support groups, training programs, telephone contact, online communities, blogs, conferences, and newsletters. Much of the help these organizations offer is available free of charge.

TIP #2

Your pediatrician or primary care doctor can do the assessment. However, be aware that expertise in ADHD varies greatly—especially with adults. To make your doctor’s job easier, you and a teacher can fill out an assessment checklist before the visit. The American Academy of Pediatrics has an ADHD Toolkit with an ADHD assessment checklist and treatment recommendations. This toolkit is available to doctors and non-medical people. The AAP toolkit provides Vanderbilt Rating Scales for parents and teachers; you can find the toolkit at AAP.org. You can also download the Vanderbilt Rating Scales from other websites. Doctors for adults vary greatly in using assessment tools for ADHD. For an adult ADHD assessment, you can download checklists such as the Adult ADHD Self-Report Scale (ASRSV1.1) or the ADHD Rating Scale (ADHD-RS-IV).

TIP #3

Your doctor may refer you to another specialist. A psychiatrist or a psychologist can do the assessment. Your doctor may be able to contact a professional colleague who will do a pro bono or sliding scale assessment, or a medication review, or even help with behavioral parent training.

TIP #4

If your child is having significant problems in school, he or she could qualify for extensive psychological and educational testing by the school staff. First, ask through the principal’s office for the education management team. If approved, the school evaluation may include a thorough assessment for ADHD, learning disabilities, and psychosocial difficulties. If your child has significantly impaired availability for learning due to ADHD, then the school is required by federal law to provide necessary accommodations and interventions. Although the school cannot prescribe medication, your doctor could review the school report and possibly follow through with treatment.

TIP #5

Many counties have behavioral clinics that can help an adult or child with evaluation and treatment. Your local county mental health centers and community service boards may be able to provide assessment and treatment services on a sliding scale. The website for the Substance Abuse Mental Health Services Administration lists these nationwide programs. There are also county Early Intervention Programs that will provide services for very young children who need testing and follow up services. Under the US Department of Education, statewide Parent Information and Resource Centers help parents of children with disabilities find resources and provide up-to-date training. For therapy or behavior management, you may find that group therapy or training is more affordable than individual therapy.

TIP #6

Some hospital-based clinics offer services for free or on a sliding scale basis. Hospital clinics are more likely to participate with a wide range of insurance plans. Many hospitals have interns and residents in training who provide treatment under mentor guidance. Some adult and children’s hospitals have specialized ADHD clinics that take finances into consideration. Hospitals that are a part of a large healthcare system can also have outside clinics for low income or uninsured children or adults. Some of these centers will consider sliding scale or free rates.

TIP #7

There are county medical clinics in all states. These clinics provide medical care for uninsured families with low incomes. They may be able to arrange for services with outside specialists if they cannot perform the treatment themselves. These clinics may also provide help with medication. To find these centers, visit the websites of the Health Resources & Services Administration or to the National Association of Free and Charitable Clinics.

TIP #8

College and university programs set up training centers for future doctors, psychologists, and social workers. Your local colleges may have such a program. This could make assessment and counseling could be affordable.

TIP #9

Clinical research programs may qualify adults or children for an ADHD assessment and treatment. Check out your local academic hospital or the National Institute of Mental Health to see if one of their studies might be a good fit.

TIP #10

Check ADHD websites such as ADDfreesources.net for information on how to look for resources and free assessment forms.

TIP #11

Parents can keep their children on their private health insurance plan until age 26. Most states allow children with disabilities who are not able to be self-supporting to stay on their parents’ insurance after age 26.

TIP #12

Check to see if you qualify for Medicaid in your state. Some states qualify both adults and children, though some cover only children. There is also a federal program called Children’s Health Insurance Program (CHIP). This state program qualifies children of working parents who have incomes higher than Medicaid requirements. A family of four in Virginia can have a yearly income of $32,256, while a family of four in Texas can have a maximum income of $21,404, to qualify under the CHIP program.

TIP #13

County social services agencies can assist you with finding federal, state, and county funding for services and treatment you need. Search for your local office via your state government website; for example, Alabama – Department of Social Services.

TIP #14

Faith-based social services agencies and churches can also guide you to services in your area. Organizations such as Lutheran Social Services, Catholic Charities, Salvation Army, United Methodist Ministries, Jewish Social Services, etc. may be able to help you get the services you need and provide limited financial assistance.

TIP#15

Some foundations provide local medical care; for example, the Children Partnership Foundation in Springfield, Virginia. Some national foundations may be able to assist as well, such as the Children’s Health Fund for Medically Needy Children or the HealthWell Foundation, which provides funding lists for specific diseases. Foundations work with local agencies and hospitals to help those individuals and families not covered by other programs.

TIP #16

The Department of Vocational Rehabilitation in each state provides assessments, financial assistance, referrals to training programs, and counseling for adults with varying degrees of disability.

TIP #17

Supplemental Security Income (SSI) and Social Security Disability (SSDI) are federal programs for more severely disabled children and adults who qualify to receive financial and medical assistance.

TIP #18

Pharmaceutical companies and pharmacy networks often have medication assistance programs to help offset the cost of your medication. Also, some nonprofit programs assist with paying for medication or offer discount prescription prices; for example, needymeds.org, rxoutreach.org, goodrx.com, and togetherrxaccess.com. Dispensary of Hope is a charitable medication distributor but it only operates in some states.

And remember, one of the benefits of CHADD membership is a free discount prescription card. All CHADD members and their families have access to the CHADD UNA Discount Prescription Card. Simply download your card and receive savings of up to 75 percent at more than 50,000 national and regional pharmacies. You may create as many cards as you need. Participating pharmacies include CVS, Kmart Pharmacy, Walgreens, Publix, Winn-Dixie, and Albertsons, as well as thousands of independent pharmacies.

TIP #19

Something to be aware of is that short-release generic versions of methylphenidate or an amphetamine (even though they are taken 2-3 times daily) are cheaper than the premium prices paid for the extended release products whether generic or brand.

REMEMBER THAT TRAINING YOURSELF IS THE KEY TO SUCCESS WITH ADHD. There are many people and organizations out there to help you!

This article was compiled by Maureen Gill, LCSW, ACC, and reviewed by Dan Shapiro, MD, and Max Wiznitzer, MD.