COMMENTS ARE DUE MONDAY FEBRUARY 17, 2020, AT 11:59PM.

The Camphill School wants to help current, alumni, and future families and their children advocate for themselves. This includes informing you of government policy-making that impacts people with special needs and their families and point you to ways you can get involved. There is currently an opportunity for families and their loved ones with special needs in the state of Pennsylvania. 

For the past six years, states have been working to implement new regulations from the federal government about how they fund Home and Community Based Services (HCBS) for people with disabilities. Pennsylvania currently has an open public comment period on an important step in this process known as “Heightened Scrutiny.” 
 
We know that our families are looking for options for their children’s futures, and our alumni families are looking for choices today. Many are concerned that at this moment, Pennsylvania is emphasizing outdated descriptions of particular settings over quality of life and individual experience, a move which may limit the service options that are available to individuals and families in the future.

Below is information on how you can make your voice heard. Please know that the more personalized the email you send with your own story, the better. If you have any questions, please let us know.

Sincerely,
Elizabeth Sanders
The Camphill School

MAKE YOUR VOICE HEARD:
Please send your public comment via email
 
TO: RA-PWODPHCBSSETTINGS@pa.gov
SUBJECT: Public comment for proposed heightened scrutiny
BCC: EJSANDERS07@GMAIL.COM
 
We will be collecting and forwarding public comments to the Centers for Medicare and Medicaid Services (CMS) so that they know how active families are in Pennsylvania.  To make this possible please BCC Elizabeth Sanders ejsanders07@gmail.com.

COMMENTS ARE DUE MONDAY FEBRUARY 17, 2020, AT 11:59PM.

Here are sample templates to choose from. Please remember to customize to you: 

Sample 1:

Hello, I am a _______________________ [parent, grandparent, sibling, aunt, uncle, friend, guardian] of a person with a disability.

I believe Pennsylvania should support families and individuals to choose from a wide range of service delivery options that meet their unique needs and wishes. Farmsteads, gated communities, campuses, lifesharing, group homes, individual apartments, and living at home with family members can all play important roles in a diverse service system. I urge Pennsylvania to focus on people—not places—during its Heightened Scrutiny process and in all future policy making. The state should provide resources to individuals and families to do what works for them and invest in expanding and diversifying options in the service system so that everyone can create meaningful lives.

Information distributed by Pennsylvania’s Office of Developmental Programs about their Heightened Scrutiny process raise concerns that ODP is emphasizing outdated descriptions of particular settings over quality of life and individual experience, regardless of the setting.  

ODP needs to make several changes to its Heightened Scrutiny tools : (1) ODP needs to make explicit accommodations to support individuals who are non-verbal or need the support of a personal advocate, family member, or guardian to participate in on-site interviews. (2) ODP should remove outdated descriptions of particular settings as a way to assume individual experience and inclusion and instead focus entirely on actual outcomes. (3) ODP needs to provide stakeholders with adequate education and information they need to engage in this process, including how to submit public comment, which in this case they have failed to do. 

Thanks for your time and attention to my email, [YOUR NAME & PA ZIP CODE]

Sample 2:

Hello, I am a _______________________ [parent, grandparent, sibling, aunt, uncle, friend, guardian] of a person with a disability.

In its Heightened Scrutiny process, ODP should include accommodations for individuals who have communication challenges or need the support of a personal advocate, family member, or guardian to participate in on-site interviews so that everyone’s experiences can be included.  As part of this, ODP should focus more on individual experience in all settings and not rely on outdated descriptions of certain types of settings.

Moving forward, many stakeholders don’t have the education and resources they need to get involved in Pennsylvania’s HCBS transition.  ODP should provide stakeholders with more opportunities to get engaged by presenting all of its policy changes in a single place, providing on-the-ground educational opportunities for all stakeholders, and offer opportunities to revise the state’s policies moving forward.

Thanks for your time and attention to my email, [YOUR NAME & PA ZIP CODE]

WHY IT MATTERS TO YOU: A short personal story explaining why choice and a broad range of options matters to you and your family.

Together for Choice, a national advocacy organization with a mission to protect and advance the rights of individuals with intellectual and developmental disabilities, has written their own powerful public comment to the state of Pennsylvania. View it here.

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