Cindy Stark Celebrates 30 Years with Paraquad

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This summer, Paraquad Accounting Manager Cindy Stark celebrated her 30th anniversary with the organization. Coming to Paraquad just a year after the passage of the Americans with Disabilities Act in 1990, she has been able to witness how the organization has grown in serving St. Louis’s disabled community. She has also seen how the Disability Rights and Independent Living movements have changed society’s perceptions and treatment of people with disabilities

Like some of the other employees at Paraquad who do not live with a disability, Cindy did not know a lot about the disabled community before she began working at the organization, but she was a highly qualified certified accountant and just what Paraquad needed at the time. Back in those days, she says, paychecks were written by hand for a staff of only 30.

Though Cindy didn’t know much about the struggle for disability rights and independent living when she first took  the job, she could not help but be moved by the energy and passion that surrounded her at Paraquad. She was here during eventful years when Max Starkloff, Jim Tuscher and Bill Sheldon were among those leading the organization. Starkloff, left quadriplegic following a car accident at 21, was Paraquad’s Founder and first Executive Director and already a nationally known pioneer in the movement. Tuscher, who became paraplegic in his mid-20s due to a spinal tumor, was Vice President of Public Policy and Missouri’s leader in lobbying for the ADA. He was on the White House lawn when it was signed into law by President George H.W. Bush. And Bill Sheldon, deaf but a skilled lip-reader in three languages, was Director of Deaf and Hard of Hearing Programs who created the first federally funded program of its kind at a Center for Independent Living.

A sentiment that stands out for Cindy is a remark often made by Tuscher. “Let’s get that fire in the belly,” he would say. Cindy says there was a particularly heightened spirit at that time. “People were going to Jefferson City, protesting and chaining themselves up to things. Just being around that and feeling the whole spirit of it was something to experience.”

Cindy is now working for Paraquad’s fourth Executive Director, Jerry Ehrlich. She says that much of what has been fought for has changed for the better and believes the public in general has a higher awareness of the needs of people with disabilities. Nevertheless, she knows that much work is yet to be done to educate the general public and break down the barriers that people with disabilities continue to face. She says we all should be aware that the disabled community is the only minority group that any one of us could suddenly become a member of.

Of the people working at Paraquad, most of whom have a disability, and those with disabilities they serve, she says, “They are simply awesome. Everyone here wants what is best for the participants. A lot of it is about seeing their independence and seeing that people with disabilities can have jobs and do well. They don’t have to live in nursing homes. They can move about and live their lives like everyone else does. To help someone live the best life they can possibly live . . . what better mission could there be?”

Parkinson’s Foundation Awards Grant to Orthwein Center at Paraquad

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Parkinson’s Foundation Grants More Than $2.2 Million to Local Communities for Parkinson’s Programs

Paraquad  Awarded $11,050 for Exercise Programs for Those with Parkinson’s Disease

NEW YORK & MIAMI – The Parkinson’s Foundation announced the recipients of more than $2.2 million in community grants for Parkinson’s programs across the country. Community grants support local health, wellness, and educational programs that address unmet needs in the Parkinson’s disease (PD) community. Paraquad, Inc. was awarded $11,050 to help individuals living with Parkinson’s Disease access exercise classes and other resources at the Stephen A. Orthwein Center at Paraquad.

“We are pleased to be able to provide these community grants and to expand programs and resources throughout the Parkinson’s community,” said John L. Lehr, Parkinson’s Foundation president and chief executive officer. “Every one of these grant recipients shares our commitment to making life better for people with Parkinson’s disease.”

The Parkinson’s Foundation awarded grants ranging from a minimum of $5,000 to a maximum of $25,000 per grant application. This year’s grant cycle focused on three areas, including: programs that provide services for diverse and underserved populations, initiatives that reach the newly diagnosed, and programs that address mental health and Parkinson’s. Of the $2.2 million being granted, $1.6 million will help fund essential programs that focus on diverse and underserved Parkinson’s communities.

Paraquad champions equity and independence for people with disabilities through services, partnerships, education, and advocacy. We envision an integrated society free of barriers and discrimination where disability is viewed as a natural part of human diversity. This award will provide ten gym membership scholarships to low-income individuals with Parkinson’s Disease, as well as a special exercise class designed specifically for people with Parkinson’s disease, enabling Paraquad to serve a geographically and a financially under-served population.

Programs funded by the Parkinson’s Foundation community grants also include wellness, dance, music therapy and educational programs that help people with Parkinson’s live better with the disease. These programs will benefit communities in 40 states across the country.

Since 2011, the Parkinson’s Foundation has funded more than 580 community-based programs that help address unmet needs for people with PD. To see the full list of the 2021 community grant recipients, visit Parkinson.org/CommunityGrants.

About the Parkinson’s Foundation

The Parkinson’s Foundation makes life better for people with Parkinson’s disease by improving care and advancing research toward a cure. In everything we do, we build on the energy, experience and passion of our global Parkinson’s community. Since 1957, the Parkinson’s Foundation has invested more than $368 million in Parkinson’s research and clinical care.

Connect with us on Parkinson.orgFacebookTwitterInstagram or call (800) 4PD-INFO (473-4636).

About Parkinson’s Disease

Affecting an estimated one million Americans and 10 million worldwide, Parkinson’s disease is the second-most common neurodegenerative disease after Alzheimer’s and is the 14th-leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression), as well as non-motor symptoms (e.g., depression and anxiety). There is no cure for Parkinson’s and 60,000 new cases are diagnosed each year in the United States alone.

2021 CDS Strategy – Senate

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The House Budget Committee failed to restore the cuts to the Consumer Directed Services program last week. The budget will now go to the Senate Appropriations Committee, where there is another opportunity for funding cuts to be restored and for the provider rate to be increased. It is imperative that advocates across the state work together to share a unified message about the importance of CDS and funding the program.

For this round of advocacy we are focusing on social media and phone calls. There are two asks for senators. If your senator is on the Senate Appropriations Committee you will be asking them to create a Senate position to restore the proposed cuts to the CDS program in HB 10 Section 10.810 and to provide a provider rate increase so providers can keep up with the market rate. If your senator is not on the Appropriations Committee you will be asking them to let Senator Hegeman know how important restoring funding to CDS is to constituents.

You can look up your legislator here: https://www.senate.mo.gov/LegisLookup/Default.aspx

St. Louis City and County Senators

Name – District On Appropriations Committee? Contact Information
Senator Beck – 1 No Phone: 573-751-0220
Twitter: @dougbeck562
Facebook: @DougBeckMO92
Senator May – 4 Yes Phone: 573-751-3599
Twitter: @karlamaymo4
Facebook: @ karla.may.165
Senator Roberts – 5 No Phone: 573-751-4415
Twitter: @robertsforstl
Facebook: @robertsformissouri
Senator Mosley – 13 No Phone: 573-751-2420
Facebook: @angela.mosley.10
Senator Williams – 14 Yes Phone: 573-751-4106
Twitter: @brianwilliamsmo
Facebook: @williamsforsenate14
Senator Koenig – 15 No Phone: 573-751-5568
Twitter: @koenig4mo
Facebook: @andrew.Koenig.7509
Senator Schupp – 24 No Phone: 573-751-9762
Twitter: @jillschupp
Facebook: @jill.schupp.5

Sample Social Media Post:
(To Senators on Appropriations)

@____ I care about CDS. Disabled Missourians need a Senate Position to restore funding to HB 10 Sec. 10.810 and increase the provider rate so people can stay in their homes.

Sample Social Media Post:
(To other Senators)

@____ I care about CDS. Please let Sen. Hegeman know that the proposed cute to CDS in HB 10 Sec. 10.810 need to be restored and the provider rate increased so constituents can stay in their homes.

Sample Call:
(To Senators on Appropriations)

Hi, my name is _____, and I live in ______. I would like to speak with Senator _______’s Legislative Director.

I care about the Consumer Directed Services Program, and wanted to urge the Senator to support a Senate Position to restore the funding and add a rate increase to HB 10 Section 10.810. The house made the terrible decision to keep Governor Parson’s proposed cuts, and now it is up to the Senate Appropriations Committee to reverse the cuts and provide a rate increase to this program that keeps over 30,000 Missourians living independently in their homes. [If you are a CDS Participant or Attendant, use this time to share your story about the positive impact CDS has had on your life]

Sample Call:
(To other Senators)

Hi, my name is _____, and I live in ______. I would like to speak with Senator _______’s Legislative Director.

I care about the Consumer Directed Services Program, and wanted to urge the Senator to let colleagues on the Senate Appropriations Committee know that their constituents support a Senate Position to restore the funding and add a rate increase to HB 10 Section 10.810. The house made the terrible decision to keep Governor Parson’s proposed cuts, and now it is up to the Senate Appropriations Committee to reverse the cuts and provide a rate increase to this program that keeps over 30,000 Missourians living independently in their homes. [If you are a CDS Participant or Attendant, use this time to share your story about the positive impact CDS has had on your life]

URGENT: Proposed CDS Budget Cuts

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We have some bad news: The Governor has proposed a SECOND cut to funding the Consumer Directed Services program for Fiscal Year 2022. If the proposed funding cuts are passed it could mean you or someone you love will lose services.

We need your help.

There are several ways you can get involved:


Email – Right Now!

Email your Missouri State Representative and let them know that these proposed cuts could really hurt you. Tell them what would happen if you did not have CDS. What kinds of things would you have to stop doing? Phrases you can use:

    1. “My services will be cut if these cuts pass”
    2. “I am afraid I will have to quit [list some things you do in the community]”
    3. I will have to live in a nursing home because I can not [list some tasks that your attendant helps you with, like cooking, bathing, using the restroom, cleaning] by myself and the only other option for my needs to be met is if I am in a nursing home. I do not want that”

Sample Email – you can customize this to make it personal! The more personal the better!

Dear Representative_________,

My name is ______ and I am a constituent in your district. I am writing today to let you know that I am passionate about the Consumer Directed Services (CDS) Program. Governor Parson has proposed two budget cuts that would devastate the program. Without CDS I will lose my independence. Please encourage Representative Cody Smith to stop the cuts in HB 10, Section 10.810. Missouri has the funds available, especially with the funding from the most recent COVID relief bill. Thank you for your continued support of People with disabilities.

Warmly,

[Name]

Social Media and Conversations With Friends and Families – Right Now

Share this blog and tell your family and friends how CDS helps you. Ask them to call their state representatives to share the message about the proposed cuts.

Sample post or message to family/friends:

Governor Parson has proposed TWO budget cuts to Consumer Directed Services, the program I use to live independently. Advocates across the state are working together to make sure these cuts don’t happen. Call your Missouri State House Representative between 9:00 AM and 12:00 PM on Monday to let them know that funding for Consumer directed services should not be cut by saying “Please encourage Representative Cody Smith to stop the cuts to Consumer Directed Services in HB 10, Section 10.810”.

Phone Calls – Monday from 9:00 AM – 12:00 PM

Call your Missouri State House Representative on Monday to let them know that funding for Consumer directed services should not be cut.  Phrases you can use during the call stress the importance of blocking these cuts:

  1. “My services will be cut if these cuts pass”
  2. “I am afraid I will have to quit [list some things you do in the community]”
  3. “I will have to live in a nursing home because I can not [list some tasks that your attendant helps you with, like cooking, bathing, using the restroom, cleaning] by myself and the only other option for my needs to be met is if I am in a nursing home. I do not want that”

Sample call script:

My name is ______ and I am a constituent in your district. I am calling today to let the Representative know that Governor Parson has proposed two budget cuts that would devastate the Consumer Directed Services program. I use this program to live independently. Without CDS I will lose my independence. Please encourage Representative Cody Smith to stop the cuts in HB 10, Section 10.810. Missouri has the funds available, especially with the funding from the most recent COVID relief bill. Thank you for your time and willingness to support people with disabilities.

Find your Missouri State Representative here: https://www.senate.mo.gov/LegisLookup/Default.aspx

Office of Governor Michael L. Parson
P.O. Box 720
Jefferson City, MO 65102
Phone: (573) 751-3222

You can email the Governor’s office via this link:  https://governor.mo.gov/contact-us

If you have any questions or need help finding your Representative please call Sarah at 314-289-4277!

2021 St. Louis City Mayoral Election

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St. Louis City’s 2121 Mayoral Election is just around the corner!

On March 2nd four candidates will be on the primary ballot; the two winners will run against each other in the April 6th General Election.
The candidates and their top priorities are listed below. More information can be found on each individual’s website.


Lewis Reed
reedforstlouis.com

  • Reduce crime and gun violence
  • Support workforce development, small businesses, and job growth
  • Protect homeowners at risk of foreclosure
  • Increase government transparency
  • Protect the environment
  • Protect St. Louis’ unique neighborhoods

Tishaura Jonestishaura4mayor.com

  • Committed to equity and inclusion
  • COVID-19 Recovery will be two pronged and focus on the economy and preparedness for future health crisis
  • Community first public safety plan
  • Modernizing City policies and procedures
  • Address income inequality
  • Encourage development in North and South City
  • Champion issues relating to children, youth, and families

Cara Spencercaraspencer4mayor.com

  • Violence reduction with a 10 step data driven plan
  • Strengthen St. Louis School system
  • Against Airport privatization
  • Center racial equity
  • Revitalize neighborhoods and reduce vacant property
  • Run City government efficiently and professionally
  • COVID-19 Recovery
  • Economic Development

Andrew Jonesandrewjones4mayor.com

  • Strengthen public safety by reducing violent crime and improving PR
  • Send more resources to schools
  • Economic Development by reducing violent crime and welcoming businesses
  • Infrastructure development
  • Thoughtful police reform

For information on how to vote in the Municipal Elections visit the St. Louis City Primary Muncipal Election webpage.

Consumer Directed Services Day of Action – February 3, 2021

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Your advocacy is needed this Wednesday, February 3rd!

The Missouri House Budget Committee is busy developing our state’s FY2022 budget and we must let them know how important the Consumer Directed Services (CDS) and other personal care programs are to Missourians with disabilities.

We are asking advocates across the state to reach out to House Budget Chair Smith and Vice-Chair Deaton to ask them to include additional funding for CDS providers so Missourians with disabilities and seniors can continue to receive quality personal care services in their own homes and their attendants can receive a living wage for the critical work they do.

Here is how you can reach the legislators making these important budget decisions:

Committee Member Name Twitter Phone Email
Rep. Cody Smith (R) – Chair @cody4mo
573-751-5458
Cody.Smith@house.mo.gov
Rep. Dirk Deaton (R) – Vice-Chair @dirkedeaton
573-751-9801
Dirk.Deaton@house.mo.gov

 

Here are some sample messages you can use:

Sample Tweet – Consumer:

I use CDS to live in my community. My attendant helps me _______, ___________, & _______. Without them I would not be able to live in my own home or work, and my attendant deserves a living wage. Please increase provider rates.

Sample Tweet – Attendant:

I am an attendant through CDS. I help the individual I work for ______, _______, & _________. I love my job, but I could make more money working less hours at target. Please increase provider rates so I can earn a living wage.

Sample Tweet – Loved One:

Someone I love uses CDS to live independently in their home. I worry about their health & safety if they do not have access to these services. I can not quit my job to help them; please increase the provider rates so they can live in their home.

Sample Email/Phone Script – Consumer:

Good afternoon, Representative:

My name is _____________ and I live in _______________. I am a person with _____disability and I use Consumer Directed Services to live in my home and participate in my community. Without CDS I would not be able to be independent, and I would have to live in a nursing home, which I do not want to do. Please increase the provider rate so that I can continue to live independently. As minimum wage continues to increase it makes it harder for me to keep attendants, as they can earn more money working at Target or Walmart. Please increase the provider rate so that I can continue to receive CDS, live in my home, and pay attendants a living wage.

Warmly,

________

Sample Email/Phone Script – Attendant

Good afternoon, Representative:

My name is _____________ and I live in _______________. I am a personal care attendant for a person with a significant disability. I assist them with activities of daily living such as using the restroom, bathing, getting dressed and eating meals, among other things. Without personal care attendant services the individual I assist would not be able to live in the community. It is crucial that the provider rate is increased so attendants can be paid a living wage.

Warmly,

___________

Sample Email/Phone Script – Loved One

Good afternoon, Representative:

My name is _______ and I live in ___________. My loved one has a significant disability uses Consumer Directed Services to live independently in the community. I can not afford to quit my job to help them if they do not have an attendant. Please increase the provider rate so that my loved one is able to pay a living wage and continue living in the community.

Warmly,

________

Missourians with disabilities want to remain independent in their own homes and our state lawmakers need to prioritize this funding.  Let them know how you feel!

If you need any additional information or have questions please contact Sarah Schwegel at Paraquad (314-289-4277 or sschwegel@paraquad.org).

Youth to Adult Medicaid Transition Summit

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On November 17th, Paraquad hosted a virtual summit to discuss the transition from youth to adult Medicaid services for people with disabilities.  This transition can be challenging and daunting for new college students or young adults entering the workforce. This event provided parents, educators, and students with the information and resources to navigate this change.

Hosts Briana Conley and Sarah Schwegel from Paraquad’s Public Policy and Advocacy department welcomed over 100 attendees and 14 speakers from across the St. Louis area, many of whom offered advice and shared their personal experiences with making the jump from youth to adult Medicaid services. The all-day event was open to the public and featured experts from Paraquad, the Special School District of St. Louis, St. Louis University, Metro Transit, and more. Attendees learned about the application process for adult Medicaid services, supplemental waivers available to people with disabilities, reasonable accommodations for college students with disabilities, transportation services for people with disabilities, and job placement services for recent high school or college graduates. Sarah Schwegel and Raven McFadden of Paraquad shared their experiences as college students transitioning to adult Medicaid services and living independently on campus.

Attendees received an informational packet with resources and additional information about Medicaid and the various services available to young adults with disabilities and their parents to ensure a smooth transition.

Voter Education

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Paraquad’s Public Policy & Advocacy Department has been busy spreading the word across the state about how and why to make sure everyone is able to vote and be heard this November.  If you haven’t had the chance to attend one of our trainings, no worries!  Public Policy & Advocacy Specialist Sarah Schwegel recorded a training to share with you.

Follow the link below to watch the video, and feel free to email sschwegel@paraquad.org with any questions!

Breaking Down Barriers: Ensuring People with Disabilities Can Exercise Their Right to VOTE

If you would like to attend a live presentation, check out our schedule, or contact us to schedule an event for your organization or group!

Federal Ask Regarding COVID-19 Relief

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At the federal level, Congress is continuing to work on the next COVID-19 relief package, and people with disabilities are at risk of being forgotten. Advocates must work together to ensure this doesn’t happen. You can find your legislators by using this tool.

To save you time, Paraquad has put together the following templates for you to use when reaching out to your legislators:

Twitter
Please include an increase in Medicaid funding in the next COVID-19 bill so that I can continue living safely in my community! (Tag your legislators)

Call
Hello, my name is ___(Your Name)___ I am a constituent, and my zip code is ___(Your Zip)___. I am a person with a disability, and I am extremely disappointed that HEALS does not include increased funding for Medicaid or protections for home and community-based services (HCBS). I rely on HCBS to live safely and independently in my home, not a nursing home. If HCBS is not funded, I could be forced to live in a nursing home, where the risk of COVID is much higher than in my community. I urge __(Your Elected Official)__to include increased Medicaid and HCBS funding in the final bill.
Thank you for your time!

Email/Letter
Dear Representative/Senator ____(Your Elected Official)_____,
I am a voter with a disability, who is an active member of your district. I am extremely disappointed that HEALS does not include increased funding for Medicaid or protections for home and community-based services (HCBS). I rely on HCBS to live safely and independently in my home, not a nursing home. [2-3 sentences about your attendants and how Medicaid helps you]. If HCBS is not funded I will be forced to live in a nursing home, where the risk of COVID is much higher than in my community. I do not want to live in a nursing home, I want to be an active member of my community! I urge you to advocate for increased Medicaid and HCBS funding in the final bill.
Thank you for your time.
Sincerely,
[Your Name & Contact Info]

If you would like assistance with crafting your message, please reach out to Sarah at sschwegel@paraquad.org or 314-289-4277.

MEDICAID IS ESSENTIAL

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Guest Blog by Gabriella Garbero

For more from Gabriella visit https://thegirlwhosits.com/ 

Having been a disabled Medicaid recipient for all of my adult life, I have seen firsthand how this program has allowed people with disabilities to live as independently as possible, in turn making society richer, more diverse, and an all-around better place to be. Medicaid has been critical in my life and the lives of people I care about because it has provided unparalleled coverage for many unique heath care needs, including home health services that allow us to live in the community, work, and go to school.

The effect that the Missouri Medicaid program has had on my life is truly immeasurable. I enrolled in Medicaid when I was eighteen and unsure how I would be able to live independently and go to college. I was immediately put on a waiver program that provided me with caregivers so I could live away from my parents and experience independent life for the first time. As I have gotten older, Medicaid has become even more valuable to my way of life. If I did not have it, I truly do not know where I would be, as being physically dependent on family members has become less possible over the years due to the ages of my parents and distance of my siblings. Medicaid has enabled and encouraged my independence in this way and so many others.

I began law school in the fall of 2018 and am pursuing a health law concentration. In my studies I have learned even more about Medicaid from different perspectives. Medicaid has widened the safety net for so many people who would otherwise be excluded from the health care market. In Missouri, a quarter of all people with disabilities and two-thirds of nursing home residents are covered by Medicaid. Now, with COVID-19 affecting virtually all of our lives, Medicaid has become an important protective tool for society because it covers the most vulnerable. Now, more than ever, we see that taking care of ourselves includes taking care of others who may not have the resources to do so themselves. Health care is and always has been a collective effort in which no one should be left out or overlooked, regardless of their level of need. Medicaid is an important entity for this purpose.

For those of us who are medically vulnerable, the stakes are always high, but are especially high right now due to the pandemic. Medicaid has always been a program that can bend and stretch in ways that allow for coverage of whoever is left out of the current health care market. That could be any of us at any point in life. If the pandemic has taught us anything, it should be that denying healthcare to individuals that need it can have catastrophic effects on us all. We need to support, strengthen, and increase access to Medicaid so that all Missourians have the quality, affordable healthcare that they and their families need to get and stay healthy.