Jennifer is used to advocating for her son, J, who was diagnosed with autism at the age of three.

Two years ago, she hit a wall she just did not know how to climb herself. Enter Legal Aid of WV (LAWV).

Jennifer applied for the West Virginia Intellectual and/or Developmental Disabilities Waiver (IDDW) for her son when J was 15. The program is part of Medicaid’s services in West Virginia and was created to help keep those with intellectual disabilities in their homes and communities rather than an institutional setting.

IDDW “provides services that help to teach, train, support, guide, and assist members reach the highest level of independence possible in their lives,” according to the West Virginia Department of Human Services (WVDoHS).

“To be J’s advocate—first of all, I’m honored. Nobody is else is going to do it,” Jennifer says. “On the flip side, even in the school system or life itself, we have to fight for everything. I won’t always be around. I have friends with experience in special education who first told me about IDDW and told me to get it for J because the benefits will stay with him for his lifetime.”

Jennifer set up J’s first evaluation for IDDW after reviewing the requirements for IDDW on the WVDoHS website. A week or two later, they received a letter in the mail saying J was not considered eligible.

Jennifer followed the steps to set up a second evaluation, this time using Zoom.

“We got another no after the Zoom evaluation,” says Jennifer. “The third option was a hearing, and a friend of mine had my attorney help before, so she gave me her information. I called and told her my story. After she reviewed my information, she said, ‘Yes. We’d like to represent you.’”

Jennifer and her LAWV attorney prepared for the hearing in front of WVDoHS in the months leading up to the scheduled date. Finally, they arrived at the hearing, ready and hopeful.

Unfortunately, the hearing proved to be a frustrating experience for Jennifer.

“They told me the evaluation found that J has an intellectual development disorder, not a disability,” she says. “They explained that was all they needed to say, but they would explore their reasons since we were at the hearing. They went on to say the evaluation found J was not eligible because they were judging him based on new criteria that would soon take effect. That didn’t make sense to me. I checked, and he met the eligibility. I just wanted to know why.”

After the hearing, Jennifer and her attorney discussed the outcome, and they decided to appeal the decision. J’s determination should not have been made using rules that were not in effect yet.

Through the appeal, J was granted a third evaluation, where he was determined eligible for IDDW.

“This March, we got the letter saying he was now on the waitlist,” says Jennifer. The process took almost two years from the date of her application. “My attorney actually went back and asked that we be moved up the list to reflect the date I originally applied, and they agreed. We are still on the waitlist for services, but we are much closer now.”

Even though Jennifer is thorough about finding services and learning about J’s needs, she says she probably would not have kept going without LAWV’s help.

“I don’t think I would have known on my own to appeal and get a hearing as a person representing myself and my son,” Jennifer says. “From the first no, I hesitated. I thought, ‘This is a psychologist. Maybe J doesn’t have a disability.’ But after the second no, I kept thinking, ‘He meets the requirements.’ I was not understanding, and having an attorney affirm that he seemed to meet them made a big difference.

“I think of the ones who get a no from the get-go and don’t appeal it. It breaks my heart that they get that no and just stop. I think, what if I would have stopped trying?”

Both Jennifer and her LAWV attorney are pleased she found the chance to keep trying.

“Jennifer is an amazing advocate for her son,” says her attorney. “When Jennifer received the initial evaluations and determination, she knew right away that they did not match with what she knew about her son’s abilities. We were thrilled to be able to help her ensure a more secure future for J.”