Proposed Community Living Waiver Webinars by ODP

AUDIENCE: Individuals, Families, and Other Interested Parties

PURPOSE: To announce that Office of Developmental Programs (ODP) will hold two webinars to receive comments on the proposed Community Living Waiver.

DISCUSSION: To thoroughly outline the proposed Community Living Waiver and provide an opportunity for public comment on the proposed waiver, ODP will hold webinars:

  • September 18, 2017, from 2 to 4 p.m.
  • September 20, 2017, from 10 a.m. to 12 p.m.

Attendees must register at this link: https://attendee.gotowebinar.com/rt/283400605580855811 then select the time they prefer from the drop down box. Participants are able to attend the webinar by phone, but will need a computer to provide comments during the webinar. Each webinar has a 500-person limit, so if groups of individuals will participate together, ODP requests that they register under one name. For those unable to participate, the webinar will be posted after it has finished on MyODP.org at https://www.myodp.org/course/view.php?id=1026

BACKGROUND: ODP Announcement 091-17: Public Comment Opportunity – New Proposed Community Living Waiver Effective January 1, 2018, Including Proposed Rate Setting Methodology and Fee Schedule Rates explained:

  • Where to view proposed waiver documents
  • How to provide public comment

CONTACT: Questions about this communication should be directed to RA-odpcomment@pa.gov.

*Posted via information provided by ODP Communication.

Proposed Community Living Waiver Webinars by ODP

AUDIENCE: Individuals, Families, and Other Interested Parties

PURPOSE: To announce that Office of Developmental Programs (ODP) will hold two webinars to receive comments on the proposed Community Living Waiver.

DISCUSSION: To thoroughly outline the proposed Community Living Waiver and provide an opportunity for public comment on the proposed waiver, ODP will hold webinars:

  • September 18, 2017, from 2 to 4 p.m.
  • September 20, 2017, from 10 a.m. to 12 p.m.

Attendees must register at this link: https://attendee.gotowebinar.com/rt/283400605580855811 then select the time they prefer from the drop down box. Participants are able to attend the webinar by phone, but will need a computer to provide comments during the webinar. Each webinar has a 500-person limit, so if groups of individuals will participate together, ODP requests that they register under one name. For those unable to participate, the webinar will be posted after it has finished on MyODP.org at https://www.myodp.org/course/view.php?id=1026

BACKGROUND: ODP Announcement 091-17: Public Comment Opportunity – New Proposed Community Living Waiver Effective January 1, 2018, Including Proposed Rate Setting Methodology and Fee Schedule Rates explained:

  • Where to view proposed waiver documents
  • How to provide public comment

CONTACT: Questions about this communication should be directed to RA-odpcomment@pa.gov.

*Posted via information provided by ODP Communication.

Come Celebrate with SAU1 – You’re Invited!

Self Advocates United as 1 has been
supporting self advocacy of people with disabilities
for positive impact in our communities and in people’s lives
since 2007. Time for our 10 Year Celebration Luncheon!

Self Advocates United as 1 logo. Image of 3 people coming together over the state of PASAVE the DATE!
Tuesday September 26, 2017
1:30 – 4 pm
National Civil War Museum
Harrisburg, PA

You’re Invited to come celebrate with SAU1 and Self Advocates!

RSVP to save your Seats at the Celebration

We are now accepting RSVPs for the celebration!

How do I RSVP to Celebrate SAU1?
There are two ways to RSVP for this event. You can RSVP online, or by mail.

Option 1:
If you are on our physical mailing list, you will receive an RSVP card to fill out and mail back with your check or money order.

Option 2:
We have also set up an online RSVP system* for anyone to use as a convenience option.
When you RSVP online you can choose to pay for your seats, and any donations, either online**, or by mail. but it will help us keep better track of the number of seats left as we take RSVPs.

*Your personal information, such as your name and mailing address, that you enter when you RSVP online is only visible by SAU1 Administrators. Your information will not be shared, given, or sold to anyone. You’re information is also stored in an encrypted format for security purposes.

**All online payments will be processed through PayPal’s Secure Payment gateway. We do not receive, and can not view or store any sensitive payment information.

Event Pricing:

  1. Single Ticket – $25
  2. Guest Ticket – $25 per Ticket
  3. Table of 8 – $185 ($15 Savings)
  4. Donation to fund a Self Advocate in need to attend* – $25
*Donations of $25 to fund a Self Advocate to attend will be used to give a Self Advocate, who is not able to otherwise attend the event, a ticket to  come and celebrate with us. This is considered a donation, and may be tax-deductible.

If you are a Self Advocate and do not have money for a ticket, Call our message line at 1 877 304 7730. Say your name and phone number two times, very slowly. SAU1 staff will call you back to let you know if we have scholarship money for you.


We couldn’t have done it without you!

Share your story of how SAU1 made an impact in YOUR life.
Email Celebrate10@sau1.org with your story or for more information.

Our mission is to support the self advocacy of people with disabilities for positive impact in our communities and in peoples lives.

Our vision is a world where individuals with developmental disabilities and their families are united to share knowledge, empower others, and use their voices to transform their lives and communities.

Click HERE to RSVP Online!


Work Incentive Planning and Assistance (WIPA) Program Advisory Meeting

Posted via Disability Rights Pennsylvania(DRP)

Work Incentive Planning and Assistance (WIPA) Program Advisory Meeting

If you receive SSI/SSDI or support individuals who receive SSI/SSDI in employment, then we want to hear from you.

Come and learn about WIPA services and what other community employment resources are available.  Let’s talk about how we can work together to help people receiving Social Security benefits reach their employment goals.

Come out and join us in helping people with disabilities fulfill their work goals.  When all people work, everyone benefits!

When:  Thursday, September 14, 2017, 12pm-3pm

Where:  Montgomery County Workforce Development Board, 1430 DeKalb Street Norristown, PA  19401 – Room:  TBD

Speaker:  TBD

RSVP by calling or texting 215-980-7730 or e-mail tvirden@disabilityrightspa.org.  If you need any environmental or language accommodations, let us know by September 7, 2017.   Free parking available.  See you then!


PCAA Upcoming Events and Information

Posted via PCAA Newsletter
PCAA is the Pittsburgh Center for Autistic Advocacy

PCAA Upcoming Events

Learn legislative self-advocacy!

Sunday, August 13
2 PM – 6 PM
Rodef Shalom Congregation (map)

We’re joining the Autism Connection of PA and the Multicultural Disability Leadership Center to present a training on legislative advocacy.

Learn the process, step-by-step, for meeting with your political representatives. Ever wondered how to schedule a meeting or what to say? This training, run by autistic self-advocates and engaged parents, will cover everything you need to know, including opportunities to practice with a panel of legislators and staffers.

Registration encouraged but not required. Reserve your spot here.

August Social Meetup

Sunday, August 27
4 PM – 7 PM
Mellon Park Rose Garden (map)

Come hang out with your local Autistic community! Each month, we host a sensory-friendly social meetup, where we hang out, play games, do puzzles, color, and enjoy ourselves as a community. These events are very laid back. Please do not worry about arriving late or leaving early!

These events seek to be as sensory friendly as possible. Please refrain from wearing strong scents or using noise devices without headphones.

Where is Hope?

Wednesdays, September 6 and 13
6 PM – 8 PM
CLP East Liberty (map)

Join PCAA and Black and disabled community builder, Dustin Gibson, for a screening of the film Where Is Hope?, which explores police violence against people with disabilities, and a panel of local speakers on this phenomena on September 6. The following week, Cori and Dustin will present a workshop on the intersection of ableism and racism, how these phenomena affect us all, and next steps.

 


 

Public Policy Report

ACTION STEP: Disability Integration Act

The Disability Integration Act has been introduced in both the US House and Senate. Senator Bob Casey is already a co-sponsor, as are Representatives Robert Brady [PA-1] and Dwight Evans [PA-2].  Key targets for co-sponsorship are Representatives: Brendan Boyle [PA-13], Mike Doyle [PA-14], and Matthew Cartwright [PA-17]. Contact your representative and ask them to co-sponsor this legislation.

Paul’s Law (PA Senate Bill 108)

Paul’s Law passed the Senate, and has been referred to the House Judiciary Committee, where it will likely stay until after the Pennsylvania budget is finalized. Expect future updates after the budget has been resolved.

PA Medicaid (PA House Bill 59)

“Legislation passed by the state Senate late last month could re-shape the commonwealth’s Medicaid program — potentially making benefit changes and requiring work from the program’s able-bodied recipients.”

– For the rest, see link.

National Healthcare Legislation

While the latest GOP attempt at repealing and replacing the Affordable Care Act failed, healthcare access is still at risk. President Trump has taken several steps to make the healthcare market more unstable, including threatening to withhold payment to insurers, releasing anti-ACA videos, decreasing the window for enrollment, and considering not enforcing the clause requiring everyone to purchase insurance. The House and Senate appear to have moved on from healthcare….for now. This doesn’t mean they won’t revisit changes in the future.

 


 

Studies and CFPs

Diversity of social strengths and challenges in autism spectrum disorder
Women often struggle to get diagnosed and get support, because clinicians and others have a male-biased view of what autism should “look like”. In clinical language, autism involves “restricted, repetitive patterns of behavior, interests or activities” (RRB), at least in childhood. RRBs are known to look different in women compared to men, but little is known about how. This questionnaire aims to ask about women’s own experiences, to understand female autism better, increase acceptance and help women get support.
Study Link
Contact: Kajsa Igelstrom, at kajsa@princeton.edu
Study on the Experiences of Young Adults with Autism
Are you a young adult age 21 through 35 who has a diagosis of Autism Spectrum Disorder or the parent of a young person with ASD in this age range? Are you available for an interview lasting 1 to 1.5 hours?This study seeks to document the experiences of young adults with autism and their families in order to inform human service providers, postsecondary education and training institutions, policymakers, and other interested in helping young adults with autism and their families.
Contact Jake Dembosky at (412)-719-3653 or j.w.dembosky@iup.edu

Participants receive a $20 giftcard to Amazon or Target for their time.

Social Brain Interaction Study
Researchers at the University of Pittsburgh are looking for adults diagnosed with an Autism Spectrum Disorder to participate in a research study investigating the brain during social interaction. Participants will wear a safe and painless device measuring brain activity using infrared light while interacting with another person and wear a small device that records their daily conversations in their homes.
To see if you qualify: Call 412-383-5280
Text 412-463-1253
childbrain@upmc.edu / www.lcbd.pitt.edu
Autism and Gender Variance Study
Researchers at UMass Boston want to learn more about your experience of identifying as gender diverse (transgender or gender nonconforming) and as being on the Asperger’s/Autism spectrum. This study might be a good fit for you: • If you are willing to talk about your experiences with these two identities • You are 18 years of age and older • Identify (broadly) as being gender diverse (transgender or gender nonconforming) and on the Asperger’s/Autism spectrum. • You are living in the U.S.
To take part in this study, please contact Meredith Maroney at Meredith.Maroney001@umb.edu
ASERT Social Skills Course
ASERT is offering a free 16-week social skills course for 18-35 year old Autistic adults. Each week involves a 75 minute instructive session providing a window into neurotypical social expectations and a 90 minute practice session with neurotypical volunteers. This social skills group is offered as part of a study funded by an Autism Services, Education, Resources, and Training Collaborative Grant from the Pennsylvania Bureau of Autism Services, Department of Public Welfare. To participate, you’ll meet with the researchers to confirm your eligibility for the program, participate in a pre-test, and a follow-up a few months after the course.
For more information, contact Ryan Schaitkin (412-339-0956 or rps30@pitt.edu – Subject line: Young Adult Participant.) Study director: Jamie Kulzer, PhD, Department of Rehabilitation Science and Technology, University of Pittsburgh
Mindfulness and Autism Study
Are you an adult diagnosed with Autism Spectrum Disorder? Do you feel stressed, anxious, or dissatisfied with your life?University of Pittsburgh researchers are conducting a 10-week Mindfulness-Based Stress Reduction research study for adults with Autism Spectrum Disorder.

This research study will involve:
• Guided mindfulness meditation practices
• Gentle stretching and mindful yoga
• Group discussions

Participants will be asked to attend 8 weekly 2.5 hour classes, a 7.5 hour practice retreat, and complete daily homework assignments. Participants will be paid up to $140.

Contact: 412-383-6727KAB277@pitt.edu

Transportation Study
We are looking for people who are 18 years and older with developmental disabilities to complete a survey asking questions about transportation. We are trying to learn about what transportation people with developmental disabilities use to get to activities in the community. We are also trying to learn about people’s experiences using public transportation (i.e., buses and trains) and what makes it hard or stops a person from using public transportation. We want to know how transportation impacts participation in life activities such as work, doctor’s appointments, shopping, social events, and any other activities important to the person. The findings of this survey will be used to identify transportation issues and help in the development of future transportation training programs.
 If you or someone you know is interested in participating in the study, please click on the following link:
Transportation Survey
Please feel free to contact Dr. Beth Pfeiffer at bpfeiffe@temple.edu or (215) 707-4504 with any questions or if would like additional information about the study.

 


DRP Opposes the U.S. Senate Better Care Reconciliation Act

Disability Rights Pennsylvania Opposes the United States Senate Better Care Reconciliation Act

As a leader in the advancement of the civil rights of people with disabilities for forty years (40), Disability Rights Pennsylvania (DRP) is opposed to the Better Care Reconciliation Act introduced today by the United States Senate (Senate).  We are deeply concerned about the direction Congress is headed and the impact this legislation will have on rights, independence, and health of individuals with disabilities.  Today, on the eighteenth anniversary of the historic Olmstead Supreme Court decision that ensured that individuals with disabilities must receive services in the most integrated setting, the United States Senate has proposed a bill that will force people with disabilities to lose access to health care and community based supports.  This bill decimates the promise of Olmstead that allows people with disabilities to participate and thrive in their communities.

The Better Care Reconciliation Act ensures that people with disabilities will lose access to critical health and mental health care.  The decision to allow states to either Block Grant or create a Per-Capita payment will result in the program being eligibility based instead of an entitlement.  Individuals will only get services if funding is available, and if there is not enough funding then individuals will be placed on a waiting list.  Waiting lists for services will grow exponentially and individuals with disabilities could be placed in life threatening situations.  This bill will result in even less funding available over time than what the House bill proposed.

In addition, there is still a requirement to provide institutional based care.  This bill will all but ensure that Pennsylvania will not have enough funding available for Home and Community Based services and supports in any way that allows people to meaningfully participate in their communities or work.  Optional services such as employment, person driven services and home and community based long-term supports would not be required to be provided by the state.  People with disabilities will have no guarantee that any home and community based services will be available ten years from now.

We call on the Senators in Pennsylvania to stand up for the promise of Olmstead and replace this bill with legislation that supports the needs of people with disabilities by retaining the current Medicaid financing system.

For more information about the rights of people with disabilities visit www.disabilityrightspa.org.

 

Posted Via Information provided by Disability Rights Pennsylvania.

 


Let’s Speak Up! and Let’s Get to Work!

Let’s Speak Up! and Let’s Get to Work!

People with disabilities and allies are invited to join us for conversation and a Free meal!

Let’s Talk About:

Self Advocacy

Self Advocates and Advocates

Everyone’s Rights

After We Eat, Let’s Talk About:

Getting ready to work

Looking for and finding a job

Applying and Interviewing

Support and accommodations

Keeping your benefits

Who can help

 

When we learn new things, we are powerful!

 

Reserve your place by June 7th! Seats are limited!

Call Regina at 724-456-1460 OR email regina@sau1.org

Tell Regina the day and place that works best for you.

Tuesday June 13, 3:30 to 7:30 pm at Hoss’s Steak and Seafood

                           2432 PA-257, Cranberry, PA 16319

OR

Wednesday June 14, 3:30 to 7:30 pm, Hoss’s Steak and Seafood

     18817 Smock Hwy, Meadville, PA 16335

 

Meet Power Coach

Sam “the Man” Maxwell

Sam has been involved with SAU1 for about 10 years now. He started back when it was under the umbrella of Vision for  Equality. He came back when SAU1 staff called him one day asking him if he wanted a job doing office work, which led him to be a power coach as well.

Right now Sam has a couple of jobs with SAU1. He does office work like laminating, shredding and other tasks at the Greenville office. He is also a power coach for the Self Advocacy Power Network for All (SAPNA) which is managed by SAU1. Sam travels to our meetings to learn material and practice his skills so he can coach others on things they need to know, like “Let’s Speak Up!” and “Let’s Get to Work!”.

Sam says he really likes working for SAU1 because it’s a good job that allows him to help other people stand up and advocate for themselves. He likes to travel as a coach to tell others his story and listen to their stories. It’s important to Sam that he makes a difference by coaching and it gets others to stand up for themselves because he stands up for himself by example.

 

The Self Advocacy Power Network for All (SAPNA) is funded and approved by the PA Office of Developmental Programs (ODP) and managed by Self Advocates United as 1, Inc.  Email info@SAU1.org.

 

To download this flyer, to give to someone who may not have internet access, please click HERE.

 

 


A Self-Advocate’s Guide to Medicaid

About Medicaid

Medicaid is the biggest health care program in the country. It’s an important part of the United States health care system. But a lot of the information out there about Medicaid and attempts to change it can be difficult to understand and navigate. That’s why ASAN is proud to announce the release of their plain language resource “A Self-Advocate’s Guide to Medicaid.” This resource was developed in collaboration with the Autism Services, Education, Resources and Training Collaborative (ASERT), and with funding from the Special Hope Foundation.

 

The Self-Advocate’s Resources

This resource is the third of several that ASAN is developing to equip self-advocates to participate in important conversations about our lives and the services we rely on. The Medicaid toolkit is available in two versions:

 

  • The Easy Read Edition. The Easy Read version is divided into six parts, each containing one subject discussed in the toolkit: Medicaid introduction and background, Who Can Get Medicaid?, What Does Medicaid Pay For?, Medicaid funding, What Could Happen to Medicaid?, and a summary and glossary explaining the terms we use in the toolkit. The Easy Read version uses pictures along with text, and has more white space.

 

  • A Plain-Text Version for either those with vision-related disabilities or those who would prefer a version without accompanying graphics. The Plain Text Version is available as one document, or in individual parts.

 

Self-Advocate’s Medicaid Resources

Easy Read Resources

Just click the link of what you are interested in below to view or download the Easy Read resource.

  1. Medicaid Introduction and Background
  2. Who Can Get Medicaid
  3. What Does Medicaid Pay For
  4. Medicaid Funding
  5. What Could Happen to Medicaid
  6. Summary and Glossary

 

Plain Text Resources

Just click the link of what you are interested in below to view or download the Plain Text resource.

Complete Medicaid Toolkit

  1. Medicaid Introduction and Background
  2. Who Can Get Medicaid
  3. What Does Medicaid Pay For
  4. Medicaid Funding
  5. What Could Happen to Medicaid
  6. Summary and Glossary

 

*Resources Courtesy of ASAN with collaboration of ASERT.