Good Afternoon Advocates

We hope everyone is hanging in and keeping safe. 


I wanted to share a new blog post by my co-worker and mom, Megan Poole Mutti and a fact sheet about Home Activities for Families: Ideas to Help Keep Kids of All Ages Occupied and Entertained, pulled together by my co-worker and mom, Rocio Perez.  We are updating a webpage for self advocates and families as well with the latest information from many of our partners.  You can also look to our facebook page and check out IPADD’s Facebook Group which recently posted this program closure activity board on alternatives to usual daily activities

For providers, IARF has pulled together some great information for service providers and community organizations here.  Access living also has a page on general disability resources.  Check those out as well.  

The Arc is working in coalition with our partners to pull together additional engagement opportunities to be announced soon.  For providers and community organizations, we are working with IARF and the Institute to coordinate messages and advocacy.

Just as a reminder – here are some good started resources in plain language for all:

Don’t forget – Advocacy is critical!

State Update

The Department of Human Services and Division of Developmental Disabilities has been working to release information and offer guidance including the latest released late Monday here on the efforts to adjust billing for programs during this crisis.

The Administration is submitting an Appendix K to the federal government to get approval to increase flexibility in how and what services can be funded during this time.  We are not yet sure how long it will take to hear back from CMS.

Tracking Support Needs for Self Advocates and Families

The Council on Developmental Disabilities released this very brief survey to families and people with disabilities to see what types of support you need during this time.  Fill it out here.

Homebased Services

We want to remind people receiving homebased services that during significant change, you can contact your SDA and/or ACCESS if you want to change your hours and your service authorization.  Rules still apply about the total budget and so with those changes, it is important to track personal support worker hours.  We are seeking further clarification on how some of the previous DHS guidance will impact homebased funded services specifically. 


We know a lot of families are concerned about their loved ones who are living with others in CILA group homes, family CILA and ICILA.  We have gathered a lot of questions, concerns and calls for guidance which we are coordinating with other advocates and sending to the state.  We hope to get the state to see that long term services are essential services and supports and thus organizations providing them should have access to supplies and be prioritized for supports similar to the healthcare profession.

We encourage families who are concerned to reach out to their specific provider to ask about unmet needs.  We also encourage the use of technology during this time to try to ensure connection among family members is kept and isolation is addressed.


Senate Passes 2nd Coronavirus Package

After President Trump signed the first $100 Billion aid package into law, today the Senate passed a second bill that includes expanded paid leave and unemployment insurance.  We expect another stimulus package as well.  Look for an action alert tomorrow outlining what we need to ensure for people with disabilities.

Also note that I touched based with our national advocates and people are advocating that if there is $1000 checks to low and middle income people, advocates and leading legislators are aware they need to exempt these funds from counting towards Medicaid, SSI and SSDI income and asset limits.