March 13, 2017
I had the opportunity to testify before the state House of Representatives Human Services Committee regarding proposed changes that would have had a detrimental impact on workers with intellectual and developmental disabilities. Thanks to the work of many advocates, service providers and workers with special needs the state altered its initial proposal to better protect workers and the workshops who employ so many.
The following is my testimony…
Good afternoon, Chairman DiGirolamo, Minority Chair Cruz, Rep. Nelson, who represents my home district, and members of this important committee, which in many ways embodies the important work that government is intended to do – to help provide for those who through no fault of their own need our help.
I also want to use this opportunity to thank Governor Wolf, Human Services Secretary Dallas, Deputy Secretary Thaler and the Governor’s Administration for their commitment to human services and the often life-sustaining programs they are charged to manage.
I am honored to be here this morning, and I appreciate the opportunity to share with you my thoughts and concerns about proposed changes to the Office of Developmental Program’s Consolidated and Person/Family Directed Support Waiver, which have a profound impact on the lives of 32,000 Pennsylvanians with intellectual and developmental disabilities and their families.
I come here this morning honored to serve as Westmoreland County Commissioner. Since taking office in 2010 I have made human services a priority. We provide services and supports to more than 1,300 people with developmental disabilities. I have had the privilege of meeting hundreds of families whose lives are impacted by a disability. I hear the pain and struggles as they attempt to weave through very complex systems to secure services to ensure the health and safety of their loved ones, not only for today but for the future when they are no longer able to do so themselves.
As Commissioner I understand all too well the fiscal restraints of government. Pennsylvania currently has 15,409 people identified as needing services – 502 in Westmoreland County alone. I request that this committee provide a clear message that money specific to the waitlist be allocated in the budget and that the Department develop a strategic plan as to how this will be addressed.
The purpose of this hearing is to respond to the state’s proposed changes to the Consolidated and PFDS waivers. Of specific concern to many is the newly developed “community participation” provisions. I would like to commend both Secretary Dallas and Deputy Secretary Thaler for their revisions from the mandated percentages of 25-50 -75 percent of time required to more of a true Person-Centered Plan, allowing for choice, as well as medical and behavioral to be considered. The ability of the individual and their team to develop the plan is imperative to success. The process of documenting exceptions must be developed and consistent with the latest proposal. Additionally, the time that person receives community-based services, such as transitional and supported employment, must be factored into these calculations. All limits on the number of individuals in a community location or a licensed facility should be removed, as CMS directly states it is the persons’ experiences that is important, not location or size.
It’s worth noting, too, that the notion of “community engagement” is already in existence through the Home and Community Habitation program. People can use their Waiver money to employ a qualified habitation worker to take them into the community to do whatever they like. To a place and to a meaningful activity of their choice. This takes place after work hours or times directed by the individuals. And it’s already happening all the time.
In addition to the impacts on people with disabilities and their families, these changes would also have a detrimental effect on local agencies that have served Westmoreland County residents for generations – places like the Westmoreland County Blind Association, Clelian Heights School for Exceptional Children and others. All offering a vast variety for services designed to meet the needs of the individuals who choose their services.
I have worked hand-in-hand with service providers and therapeutic staff, and am so grateful for the critical work they do. It also needs to be acknowledged that these professionals are grossly underpaid and deserve to be paid a living wage, and it is the responsibility of the budgetary process to establish rates that allow providers to do so. An annual cost-of-living or market evaluation should be built into the rates. The rates have not been increased for six years and according to Social Security the cost-of-living has increased nearly seven percent.
Any mandates that do dramatically affect their staffing ratios and their reimbursement rates must be adequately funded or you are putting at risk their ability to provide a much-needed service. Organizations like these that have had such a profound positive impact on bettering the lives of both children and adults now find themselves – and the people they serve – in a state of uncertainty if not outright desperation.
And lest anyone think these “sheltered workshops” are some draconian sweatshops, I would be pleased to arrange a visit for any of you any time. You would see some of the hardest-working – and happiest – people you’ll ever see!
The implication that people with disabilities can only have meaningful experiences with people without disabilities is, frankly, offensive.
For those who seek different employment options, and have the abilities to do it, I say, congratulations. I will support you and the businesses who hire you. But their success, for which we should all be proud, should not harm the workers who may not be able to do what they do for whatever reason – whether it be ability or interest. It’s all about choice.
Let me put it this way for those of you who have children. After they graduate high school, are they assigned percentages by the state of how they spend their time? Are they told by the government they have to attend a certain kind of college or work a certain job? If they have a job, how would you react if the state just told them it’s no longer good enough? That they have to leave something they love just to meet someone else’s definition of success? Trust me, you would be sitting on this side of this hearing.
I am here today for the residents of Westmoreland County who have a disability, and for their families and the people who support them. This includes my family. My wife and our family deal with the challenges, uncertainty and fear associated with disabilities every day with two of our five children.
Our 20-year-old Alex has autism. He is here with us today. He has endured a life of digestive and gastrointestinal difficulties, as well as disruptive behavior. He has never spoken. He is at that point in his life that his mother and I have long dreaded – what’s next? He is scheduled to graduate next year, and the choice of where and how he receives supports and services must remain a choice and must include an array of services to best meet his needs. Our 14-year-old Quinn has Down syndrome. He, too, has had medical issues, has limited speech, and has behaviors that interfere with his progress. While Quinn still has the benefit of youth, his transition to adulthood is near and always in our thoughts.
Alex will never be able to tell us with words, but we know he’s happy at Clelian Heights. And he would be happy, safe and productive in the workshop there with his friends and peers, and the supervisors he knows and trusts. While Quinn still works his way through school we are counting on him to have choice in his job after graduation.
I’m here today for them. And for all the Westmoreland County families I am sworn to serve.
The lives, well-being and success of both children and adults with developmental disabilities – your constituents – are about much, much more than mandated percentages and limits. They deserve fulfilling “everyday lives”, and deserve choices, just like you and I.
At issue here is “choice” – a term my friends and I in Westmoreland County have used repeatedly, and I hope effectively, to drive home the point. People with disabilities, like anyone else, should be entitled to choice. Their choice of where and with whom they receive vocational, residential and community supports should be in the best interest of them and their families, their abilities and their desires. Like every other American, they are entitled to independence and opportunity.
Choice without options is not exactly a choice.
I am proud to be a County Commissioner. And I am proud to represent my constituents here. But I am prouder today to be father to Quinn and Alex, and to represent the thousands of individuals with developmental disabilities, their parents and families, throughout Westmoreland County and Pennsylvania.
We’re counting on all of you today to help us. We’re counting on you to work with the Department of Human Services to ensure a better way. A way that respects choice. A way that respects our children and our friends, their desires and abilities. A way that respects families struggling with fears and uncertainty, none of you will ever know, or want to. We owe it to these families to get this right. And we look forward to working with you all to do it.
I thank you for the opportunity to be here with you today, for your attention to this issue and for your service to our Commonwealth.