6/24/2023 12:45pm ET

Many of you have already responded – THANK YOU – We will NEED EVERYONE to make the impact that is necessary to stop these changes that will absolutely destroy our ability to provide services.  When (not if) selective contracting applies to waiver services – PAAL WILL CLOSE

We need you – but if you can’t – you can’t.  You can, however,  give permission for us to take your child with us to Harrisburg. You can write a letter to your legislators, to Dr. Arkoosh  AND to Governor Shapiro (please copy me) Email is fine but you really need to back it up with a snail mail hard copy. In your letter, hit hard the lack of funding for services and the selective contracting issue.  The governor’s budget slashed the already insufficient budget by 170 million.  I am told the reason given is because ODP said they didn’t need it – well, we need it.

SPREAD THE GOSPEL – MOBILIZE THE TROOPS

Many of us are connected to support groups, list serves, and other networks of families of individuals with disabilities. Please forward this material to them and beg for their support as well. This is not just an autism issue. If we can descend upon the capital in thousands, like we did before, we will get the attention we need.

Please ask them to copy Gloria Satriale (gsatriale@gmail.com) with any letters they write or let me know if they will be attending.

6/24/2023 11:30am ET

Hopefully, you have all had the opportunity to read the PAAL updates from yesterday – if not, may I please call your attention to the section of the email that addressed ODP UPDATES/Advocacy.  I have just received word that the activity in Harrisburg is indeed becoming a rally much like our “Pack your Bags” Rally back in the day.  Organizers are begging for our participation.

I am begging you for yours.

At this moment I am assessing interest.  I am envisioning being able to do this in a couple of ways. At the moment, the rally is expected to kick off at 10 AM. I have spoken to organizers to request, if it is at all possible, to push back the kick-off to 11 o’clock. We are approximately one hour and 20 minutes away from Harrisburg. The best scenario would be, particularly if the rally start time remains at 10 AM, for parents, (I know this is a huge ask – but it is our future) to drive to Harrisburg with their child.  PAAL staff will meet you there.  We will participate in the Rally: flash our signs, sign petitions, visit legislators.  We will then take everyone back with us to PAAL on a bus and vans.  Alternatively, if parents cannot meet in Harrisburg, we will go together on a bus and in vans.

We have considered the distance, length of time, and the various needs of the individuals and discussed with staff our ability to pull this off successfully – we believe we can.  We will have vans at the ready in Harrisburg should anyone need to leave.  We are lucky to be in a good position to do this.   Because of the nature of our community-based program, students are used to navigation and transition.

I need to know – immediately if you will give your consent (permission slip coming next) so we can plan/make final decisions/arrangements.

Thank you again for all of your faith, trust, and support for all we do and for helping to make what are mere dreams for others our reality…………………  

Please let me know all of your thoughts and most particularly whether you give your child permission to attend –  ASAP

Back in the day when Nancy Taylor was attempting to backdoor, through the appropriations committee, regulation changes that would put an income cap barrier to accessing wraparound services, the single advocacy effort that made the difference to protect our right to services was the “Pack Your Bags” rally (Pack you Bags referring to, if these changes go through, children will need to be institutionalized because families will not be entitled to the services they need to support them at home – wraparound)  held at the Capital. I named this rally and was instrumental, along with many others, in pulling it off. Personal in-your-face appointments with your Pennsylvania, senators and representatives and you’re consistent, gentle pressure following up on these personal appointments until the legislators respond to your needs is what made the difference then and will make the difference now.

You may know that many programs in southeastern Pennsylvania have closed. People think it is because of all of the challenges Covid brought upon us. This is not true. The lack of providers and services is because, the Commonwealth of Pennsylvania, through ODP, has deliberately positioned regulations and reimbursement rates to disincentivize providers from center-based services so necessary to so many individuals.  ODP’s policies further the ideology of inclusion in the community. Community participation supports is a service under home-based community services under the waiver, which pays more money to providers under the requirement, that all of the services are taking place in the community. This leaves a provider in the untenable situation to receive less money for more effort. In other words, the more severely affected, the heart of the services to provide, particularly in the community so providers by large have moved to serving higher functioning individuals. There are now 12,000 individuals on the waiting list. Most of them have severe autism. I personally see this as an abuse of power and discriminatory and prejudical at best and, at least, a failure to provide an appropriate continuum of care options to meet a vast complexity of needs.

It is a huge effort, yes, I agree, to take the time to travel to Harrisburg, to make an appointment to meet with legislators. However, trust me, this huge effort is the single most effective method to be heard. I know this is somewhat short notice and I am disappointed that we did not get more advanced notice of this very important activity, however, it is what it is – the opportunity is before us and hopefully, we can make it happen. I will be there. I need you to be there too if it is all possible. Please read the below-forwarded email for further details. 

In the White Paper tab, I included the White Paper I was personally requested to develop by the new secretary of human services, Dr. Valerie Arkoosh which is a  comprehensive outline of the many issues that need to be discussed with legislators.  I hope this information is helpful to you in your efforts.  Please go to Harrisburg.

If you are going to Harrisburg, please register with RCPA as indicated below AND please let me know so that we can coordinate efforts and I can give you further ammunition for your arsenal, For those of you who’s children are not yet 21?  THIS IS TOTALLY FOR YOU.  If you do not act, there will be nothing there when you need it.  21 will be here faster than you think and you will enter an adult service system even less able to provide for your children as it does for us now. The adult service system is collapsing, and we will return to the days of either institutionalization or adult children living with aging parents for the rest of our natural lives. What happens to them when we die is even scarier.