PITCH, Parent Initiative to Create Housing - KY

07/16/2024

Autism CARES is making its way through the legislative process. It recently passed unanimously out of the House Energy and Commerce Committee. We hope that it will be voted on by the U.S. House of Representatives in the coming weeks. Your help...

03/15/2024

Just FYI, great program!

Interested in learning more about College for Living? We are hosting our Preview Day on April 13 from 1:00 – 4:00. We will have self-guided tours, parent and student speakers to share their experiences, and live demonstrations of our life skills classes.
To RSVP you can email [email protected] or click on the link below to complete the RSVP online.
https://forms.gle/DEiR1xo6c4TtYTmw9

02/29/2024

CALL TO ACTION ALERT ! Please share on your page!!

02/27/2024

We are in Frankfort today advocating to end the waiting list for disability services!! Support HB #6!

02/11/2024

This is exactly the expansion we need in all waivers: remove wait list, expand services, more services for adults.
housing options hopefully will be included in all waivers one day.
But our voices are needed!

01/12/2024

Did you know that you can now request a special code be added in the vehicle registration system??

If you are pulled over, this code will allow law enforcement officers to know that you are deaf or hard of hearing and there may be communication barriers before they ever approach your car.

For more information and ASL Video: Drive.ky.gov/CD

01/08/2024

Calling fundraising event enthusiasts! 🗣️

Join us for an informational meeting on Tuesday, February 6th, at 7:00 pm. Sip on drinks, enjoy light snacks, and let's dive into the exciting details of our exciting upcoming event!

Whether you're passionate about planning, love setting up the scene, have an eye for auction magic, excel at stage management, enjoy coordinating volunteers, or know the importance of a cleanup crew – there's a role for everyone!

Let's cultivate dreams together. Please RSVP by 2/2 to [email protected].

See you there! 💟

01/05/2024

Are you attending the Profound Autism Summit? Don't wait, book your hotel now! We have reserved a limited number of rooms at the conference hotel, the Burlington Marriott, as well as a nearby overflow hotel, the Burlington Hilton. See you in April!
Click here to reserve your hotel: https://ow.ly/xNRm50QnQ4G

12/10/2023

https://youtu.be/cM3FIAdOIs4?si=sA0spA5c2q-ii_KV

"As a person with autism and limited language, it is easy to be dismissed by others who automatically assumed that our intellectual level matches our verbal ...

11/16/2023

It’s exhausting trying to function on only a few hours of sleep. Living the past 20 years essentially remaining the parent of a newborn...all 5’4, 135 pounds of him.

Autism has forced me to live a life on repeat… a perpetual loop like the movie Groundhog Day.

Although it is never my intention to lose my patience, some days, my anger toward autism and all that it has stolen from our lives is misdirected at my son and for that, I’m ashamed.

Years and years of built-up frustration from never hearing the sound of his voice, never knowing what he needs or wants and feeling a complete lack of connection to him some days forces me to my breaking point.

I know that he is highly intelligent and fully understands everything being asked of him, which he demonstrates time and again through gestures and other nonverbal cues.

Through use of letter boards, I watch him easily answer age appropriate questions and share a high level of knowledge on numerous subjects which not only makes me proud but fills me with infinite amounts of hope.

Hope that he will gain more independence sooner than later.

Hope that he will begin to explain and answer the hundreds of questions I have about his favorite things, happiest memories and every day experiences and treatment - good or bad, at school and in the community.

Hope that he will acknowledge all that I’ve done to help give him the best life imaginable.

Hope that he will someday clearly communicate that he loves me.

Those are the thoughts I reflect on, when I see him struggling to function in a world that makes no sense to him and seemingly doesn't care to know or understand him.

The frequent occasions when his body betrays him and keeps his mind from cooperating are the hardest days for both of us.

Autism presents unique characteristics in each person diagnosed with it. Not being able to unlock my son's voice with therapies and methods that worked well for other autistic individuals is a cruel and unfair aspect of autism.

09/15/2023

I enjoyed touring DaySpring here in Louisville last month. They currently have 3 models for living arrangements: a couple of houses off-site with 3 residents and a staff member , 2 house on-site (one for women, one for men) with 8 residents and a staff member 24/7, and they have an off-site apartment building with 19 units for residents and 24/7 supervision for safety.
Depending on a resident’s independence, they have a few options. Residents come and go based on their individual involvement in the community. Some have jobs or volunteer, other may not.
Currently they offer a “College for Living” program as well.

The model is very workable, yet like us, they would love to be able to grow and offer exponentially more living spaces for adults who need safe places to live with varying levels of supervision and support.
Currently DaySpring can accept SCL Medicaid waiver or private pay.

Like us, they would welcome expansion of Medicaid waivers to create more slots, or add a new waiver to help cover living options.

It is not just caregivers who see this desperate need. Existing service providers are on our side.
We can ban together to help providers expand their current capacity as well as push for more facilities, more options, more facilities, state wide. That is our vision.

09/12/2023

We will!! We will make a difference in many lives. 💙

08/23/2023

CALL TO ACTION!! (Please share!)
👉🏻ARMS Advocacy Day, August 24, 2023, at the Kentucky State Fair!

SHOW UP TO SUPPORT A.R.M.S.
Efforts to reform Medicaid, including getting rid of wait lists for waivers.
(Tell the main gate you are there for “Legislative Research Committee “ and you can get in for free)

➡️For individuals attending.......We will gather by Freddy Farm Bureau in front of the Exhibition Center/ Freedom Hall at 11:30am on August 24, 2023.
➡️Anyone attending will receive an ARMS t-shirt for participating. Wearing our ARMS shirts will identify us to the legislative committee members when we walk in at noon!!

➡️1. Interim Joint Committee on Health Services meeting will be on Thursday, August 24, 2023, at 12:00 PM at the Kentucky State Fair in the Freedom Hall Conference Room 2, 2nd Floor, Kentucky State Fairgrounds, 937 Phillips Lane, Louisville, Kentucky 40209.

➡️2. The next meeting of the Interim Joint Committee on Families & Children will be on Thursday, August 24, 2023, at 2PM at the Kentucky State Fair in the Freedom Hall Conference Room, 2nd Floor.

➡️Please note:
1. Attached documents for the schedule, exposition center/parking maps, and meeting room diagram.
2. Anyone attending the Legislative Research Committee (LRC) meeting at the State Fair should inform the gate attendant to receive complimentary parking and admission. If your request is not honored, please get a receipt, it will be refunded.
3. There is no designated parking for the meeting.

Thank you,
Mary Hass
ARMS Member

(Agenda and maps in comments below)

08/11/2023

At Profound Autism Alliance, we believe that individual stories have the power to prompt action and create real change for those with profound autism. 🗣️

Every day, parents and caregivers face immense challenges in providing comprehensive care and support for individuals with profound autism.🤝

We urge you to take action and share your experiences directly with your elected officials.

Your story matters, and it has the power to shape policies and services that will positively impact the lives of individuals with profound autism and their families. 💌
https://www.votervoice.net/ProfoundAutism/Campaigns/105477/Respond

07/27/2023

❤️Dreams

Dreams With Wings is here to empower lives through innovative, person-centered supports - enabling individuals to embrace their fullest potential and lead extraordinary lives. Our dedicated team stands as pillars of unwavering support, privileged to be part of each dreamer's journey.

Together, we strive to make dreams take flight and empower individuals to soar beyond limitations, with purpose and a profound sense of joy.

Learn more today at dreamswithwings.org.

----
📷: Julia Youngblood

07/27/2023

​​​The members of the TAC serve until their successors are appointed by the organizations they represent. Anyone interested in serving on this TAC should contact the organization represented.

07/16/2023

This is what grief is.
A hole ripped through the very fabric of your being.
The hole eventually heals along the jagged edges that remain. It may even shrink in size.
But that hole will always be there.
A piece of you always missing.
For where there is deep grief, there was great love.
Don’t be ashamed of your grief.
Don’t judge it.
Don’t suppress it.
Don’t rush it.
Rather, acknowledge it.
Lean into it.
Listen to it.
Feel it.
Sit with it.
Sit with the pain. And remember the love.
This is where the healing will begin.

07/16/2023

We will never stop! 💙

07/14/2023

Not just Moms, but Dads, Grandparents, any caregivers, and SIBLINGS!
This is why our cause exists.
Our special needs adults MUST have options for safe, enriched living and their caregivers need these options for future planning, for peace of mind and to alleviate financial burden.
A sibling who becomes a guardian cannot live forever, and may not be in a situation where they are able to even care for a high need individual. Sibling guardians may not be an option at the time of a parent’s passing or even exist.
We must have options.
We must have funding.
We need your voice KY!
How would you benefit if KY’s Medicaid Waivers (MPW, SCL) could ensure living options?
Or ensure your adult-child coverage on a waiver when they reach adulthood (not a wait list, not only when it’s emergent but when the family and dependent person need help!)
Our legislators needs to hear our stories.
Please follow this page and share with families who are also feeling desperate and ready to have solid options.

07/14/2023

Adults on the spectrum need our voices!!
They need ACTIVITIES, COMMUNITY, JOB OPPORTUNITIES, FRIENDS and AN APPROPRIATE SAFE PLACE to LIVE that meets all their NEEDS!!

We have a lot of work to do for change, but there is power in numbers!

🎯

07/08/2023

So that one day I will know you can be safe, sheltered and cared for even when I can no longer do it.

07/08/2023

Autism can present quite differently. While some autistic people require support at different times, people with profound autism require 24/7 care throughout their lives. At Profound Autism Alliance, we believe understanding these differences is compassionate and provides much-needed clarity.