As leaders of intellectual disability and autism (ID/A) services, we have been raising our voices about the unsustainable staffing/direct support professional (DSP) crisis in our community.
The general assembly will complete its budget work soon. Dozens of legislative leaders have met with us and have told us they hear the voices of people with ID/A, their families, advocates, provider organizations, and DSPs. All of these Pennsylvanians have been articulate and focused on the danger to the community ID/A system.
Moms like Sandi Shaffer of Westmoreland County, whose daughter Kate cannot communicate verbally, have spoken to legislators. She’s told them how she had to quit her job to care for her daughter, juggling Kate’s care while also supporting her own 88-year-old mother’s needs.
Moms like Cindy Jennings of Lancaster County and Linda Smith of Adams County have been unable to find a DSP for their adult sons. They have assumed those duties full-time, struggling to be there for their sons, who require 24/7/365 assistance.
These parents have lost their livelihoods, sometimes their homes, and given up lives of their own. People with ID/A themselves have lost those who support them every day — DSPs they rely on and care about — the people who help them pursue their dreams.
As service providers, we speak for those who don’t have a voice — some of Pennsylvania’s most vulnerable citizens. We speak for the DSPs, who showed up every day throughout the pandemic.
We have spoken to legislators about how we once had dozens of applicants for each DSP job, but now find it impossible to hire enough qualified workers willing to work for the wage funded by the state’s rates for community disability programs. Across PA, that low rate and resulting insufficient wage has led to more than 60% of DSPs leaving their jobs within the first year of employment because they can’t afford to work for such low pay.
We have called out the need to make the DSP crisis a priority of the final budget to be enacted by the general assembly this month.
We are encouraged by the public support this cause has received throughout the commonwealth. In the last year, almost 170 feature stories, editorials, and op-eds have been published by news outlets drawing attention to this crisis and how this budget could bring stability to this area.
The provider and advocacy community has been united in calling for an infusion of additional state resources to raise DSP wages to stabilize the programs supporting the most vulnerable of Pennsylvanians.
Organizations like ours have urged a variety of policy options for legislators including:
Adding $65 million in state funds to bring community DSPs within the same wage range as state employed DSPs
Enacting an annual index to keep rates current with inflation
We are deeply appreciative of the response, courtesy, and consideration that members of the General Assembly have given to us. Members of the PA House and Senate — including those in leadership positions in the Republican and Democratic parties, from fiscal conservatives to progressive liberals — have agreed that the ID/A issue is urgent, well understood, and in need of immediate action.
Solutions are on the table in budget negotiations and for that we extend our thanks to members of the PA legislature, the public, news media, people with ID/A, their family members, DSPs and all others who have helped raise attention to this crisis to such a level that it is being discussed and addressed by the general assembly.
We look forward to the outcome of these budget negotiations with hope, optimism, and deep appreciation. The people of the commonwealth want to know what the general assembly decides.
Ruth E. Siegfried is founder and president/CEO of InVision Human Services. Her op-ed was co-signed by Sue Steege, Access Services; Stephen Suroviec, Achieva; Tonja Smith, Allegheny Community Home Care; Ed Picchiarini, Arc Human Services/Arc of Washington County; John Link, Arc of Butler County; Rebekah Cunningham, Arc of Centre County; Mark Weindorf, Arc of Crawford County; Katherine Reim, Arc of Erie County; Nancy Murray, Arc of Greater PGH; Diane O’Rourke, Arc of Mercer County; Maryclaire Kretsch, Arc of Northeastern PA; Shane Janick, Arc of Philadelphia; Paulette Miller, Beaver County Rehabilitation Center; Sharon Roskovich, Community Living Care; Susan Blue, Community Services Group; Amy Nielsen, Croyle-Nielsen Therapeutic Associates; Karen Jacobsen, Emmaus Community of PGH; Charles Walczak, Erie Homes for Children and Adults; Jodi Lamer and Nichole Trump, Family Ties; Mary Ellen Farber, Friendship Community; Lannette Lateef, Global Adult Care Services; Cynthia Dias, Greene Arc; Kim Love, InVision Customized Services; Judy Duxbury, Kiski Valley Opportunities Unlimited; Dr. Susan Latenbacher, Lark Enterprises; Susan Leyburn, LifePath; Kim Sonafelt, Mainstay Life Services; Marisol Valentin, McAuley Ministries; Christopher Shay, McGuire Memorial; Rita Gardner, Melmark of PA, New England, and Carolinas; Rick Senft, Passavant Memorial Homes Family of Services; Marco Giordana, Resources for Human Development; Eric Lindey, Step by Step; Cynthia Pasquinelli, Strawberry Fields; Peggy Vitale, SunCom Industries; Zach Wray, Sunrise Community of PA; Janeen Latin, UCP Central PA; Bill Harriger, Verland Foundation; Rich Johnson, ViaQuest; Will Stennett, Voices of Independence; Richard Douglas, Weiblinger’s Residential Care; Tine Hansen-Turton, Woods Services.
This article originally appeared on Bucks County Courier Times: Op-Ed: Disability leaders look to general assembly with optimism