Wednesday, December 12, 2018

Oh Christmas Tree

Guess who still decorates the tree without glass ornaments? When the children were little, it was a safety issue. I blogged about my CHRISTmas tree here.

I pack our tree with items that represent our faith and our special interests. We have musical instruments for the musicians in the family, baseball themed ornaments for our baseball player and fan, ice skates for our skater, and this year, I found butterflies, dragonflies, and hummingbirds to attach to our tree, for me, because I enjoy photographing those three flying creatures.

What do you put upon your tree or trees?

Tuesday, December 11, 2018

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.

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"  
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.

Friday, July 13, 2018

No, Thank You (or just "NO")

Dear Multi Level Marketing People: 


Some of you MLMs are too aggressive. Strangers to me with whom I share mutual friends try to follow me on social media. I peek at your page to see exactly who you are, and see post after post of product. NO. I don't want you to follow me and I don't want to follow you.

Please no cold calls from strangers. This one came today in a Facebook message request:
Hi Penny! How are you?? I totally realize you don't know me, but we have several friends in common at X High like XX and Mr. X. I have or I guess had a student there - Ben just graduated!! 🙂 I am reaching out to you today in hopes that I can share a bit of my journey with you since I launched my business 2 years ago. The blessings have been abundant in so many areas of my life, as in life changing personal growth, more time and financial freedom and so many enriching relationships!!! My heart and life have been so opened to the desire of wanting to help anyone I can through this business! No pressure at all, but would you be open to just chatting and hearing my story to see if this could be a life changing journey for you or maybe even someone you know as well? 💛 Thanks !!
This happens to be one of the businesses I invited to donate to a silent auction charity fundraiser. What did I get? SILENCE for our silent auction. Your company did not earn any points with me for that.

I'm lonely. At a time in my life when I should have a group of girlfriends who have my back, I have none. I moved to a new town as I was having children and then one regressed into the world of autism. Making friends is hard for a special needs mom. Then we moved again. I moved to this town seven years ago and am a 24/7 caregiver to an individual on the autism spectrum. I'd love to cultivate some friendships. I'd love to have a posse. I'd love to have a girlfriend group to do things with. 

But not for the price of becoming the downline to a stranger who uses friends to cold call people. 

A facebook friend of mine commented:
"How disappointing when you would like human contact but are considered a mere sales opportunity. It isn't about the words. It's about a salesperson taking advantage of another person's good manners in order to make a pitch."

If you have the desire to help me, get to know our family. Offer to autism-sit with our teen so my husband and I can have a date night. 

You need another downline to enrich your pockets. You're not looking to be a helper to me or my family. 

Your social media profile screams Rodan and Fields.

Hey, Stranger: Do not interrupt my day to try to get me to join your MLM.  

My response today was, "No thank you". I don't know why I feel the need to be polite. What I meant was "NO." 

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