By Stephanie Holland

Creating an advocacy agenda that helps parents, caregivers, and adults who have Down syndrome.


(noun) public support for or recommendation of a particular cause or policy.

In the Down syndrome community, there has been a long hard battle being fought in the trenches from social media, to “the Hill” to get the ABLE Act the attention it deserves.  This week, the House voted to pass the bill 404 to 17. There are still some detractors, but overwhelmingly ABLE has been touted as a “huge victory for the disability community.”

While we at The Road are excited for those whom the bill helps, we also realize that it only affects those who can afford to save for the future.  Many in our segment of the community – caregivers of adults – may not be able to benefit from ABLE.  Yes, the bill will allow people to save resources and still remain eligible for SSI benefits; but for those who rely on SSI for everyday living expenses, savings accounts are not an option.

Things We Need

In the days to come, we will post a series of articles aimed at educating caregivers and self-advocates on issues that we think are important to our specific community.  These issues affect people from all socioeconomic realities.

As we look toward creating an agenda for 2015, these are some of the issues we’ll be advocating for.

  • #RaceAndDownSyndrome – Investigate health disparities for people of color who have Down syndrome
  • #BackgroundChecks – Press for strict national guidelines for home health workers
  • #IndependentInvestigations – Change the process for in-custody deaths involving police
  • #EliminateWaitLists – Reduce the often years-long waits for disability services
  • #MoreChoices – Discourage loss of existing supports as a result of promoting inclusion
  • #Guardianship – Help train parents on available options to full guardianship
  • #IDDDentalCare – Create programs that address the dental health needs of adults with ID/DD

We invite all of our followers to join the discussion and offer any suggestions on how to proceed on these items.

Congratulations to all those who worked on ABLE, especially Sara Wolff !

Sara Wolff self advocate for the ABLE Act

Advocate Sara Wolff testified before a Senate panel in July in support of the ABLE Act.(Photo: U.S. Senate Photographic Studio)

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