Disability Advocacy for an Adult

The world of adults who have a documented disability is a new world to me, and in 2018, I think there would be more roads paved into the world. I am discovering it is a new circus, new monkeys, and just as frustrating and time consuming as the world of disability before adulthood. Here's what I'm dealing with this month.

My adult who has a disability is served by a waiver in our state. Our waiver support coordinator suggested I purchase a membership to some activity (museum, zoo) for community integration, BUT the waiver will pay for ONLY the individual with a disability.

WAIT, WHAT? My child canNOT access a zoo or museum without a caregiver. My child does not drive, cannot be left alone. The waiver won't reimburse a dual membership (individual + guest). The venue won't allow me to purchase a dual membership while providing me me a receipt for an individual membership to submit to the waiver people for reimbursement of the individual part of the membership. Additionally, both our support coordinator and other parents I've connected with say the VENUE is responsible for allowing the caregiver admittance FREE with the individual w/ a disability as an ADA accommodation. (And yes, I found a federal ruling about that. https://www.rootedinrights.org/court-museum-must-provide-caregivers-free-admission/)

The parents and the support coordinator say that the caregiver is expected to explain at every visit that he/she is the caregiver and should not be charged admission. Parents say sometimes the venue is understanding, sometimes it is not. I want certainty, not uncertainty.

Why isn't there an option for the parent to submit documentation of a disability for a dual (individual + caregiver) membership at the price of an individual?  I don't know.

In our former state (we moved seven years ago), I asked the zoo there about a caregiver on our membership, they added a special symbol to our membership card that allowed a caregiver to bring my daughter to the zoo or to accompany us as a family. No extra charge. They didn't hesitate. Easy peasy.

In contrast, a venue here says they don't have a mechanism to allow a caregiver admittance with the individual with a disability. We've exchanged several emails.

"Why can't you create an "Individual + caregiver" membership category?"

"Because we are limited to the number of categories we can offer"  

and

Why can't you offer what the venue in the other state offered? A symbol on the card that allows a caregiver ticket to be printed with each visit? 

"...our cards have a maximum party size attached to them and the SINGLE would only admit 1 at the scanning station, the caregiver would need a ticket to be scanned in each time or be on the membership card [GUEST], otherwise our gate staff have no way to count the attendance."

The rep from the venue asked for a scan of the letter that caregivers present at the ticket booth, they'll accommodate my child with a dual membership at the cost of an individual using some complicated algorithm of discounts. LETTER? I head over to a mom's group and ask them - they have never heard of such a caregiver letter.

So, I wrote a simple statement, attached it to an email, the rep at the venue says, no, that's not official. She wants to know if the support coordinator has an official letter. So, I email him. And no, he's never written such a letter. He tells me to just pay for the dual and he'll try to get the individual portion covered. He misses the point entirely. While we as her parents are able to cover the difference today, at some point, my child may NOT be ABLE to cover the difference for a dual membership and some families can't cover the extra for the dual now, and we need a policy NOW that gives individuals in her situation a way to access both community integration funds AND a community integration activity.

Adults who have a documented disability and funding for community integration need a dual membership option to access a zoo or museum that allows a caregiver that is covered by the waiver or other services that are meant for community integration.

The rules and red tape are ridiculous. This stuff takes up time and energy. We should be able to handle this in one phone call or email, but apparently we are years away from that level of understanding and preparation for our adult children who are disabled and require a caregiver.

The GOOD news is the venue is going to do what it is supposed to do and at some point, soon, I hope, and before the end of the year, I hope, my adult kid will have a membership to a beloved venue that allows a caregiver to accompany as an accommodation.