In recent years, when we’re out and about, most of us encounter more and more individuals with intellectual disabilities in competitive employment throughout our community, working hard and serving all of us in productive and positive ways.
In just the past few weeks, I’ve run into individuals with intellectual disabilities who took my tickets at AMC movies, decorated a cake for me at the bakery in Giant, bagged my groceries at Acme (what a true luxury that is anymore) and cleaned my dirty car windows with a squeegee when I stopped to get gas (another luxury that you don’t always get these days). I also noticed a few working in the cafeteria at Swarthmore College, delivering items to residents at Fair Acres and wiping and bussing tables at a local McDonald’s and Burger King. Encountering these individuals warms my heart because you can almost visibly see how their self-esteem and overall happiness is positively affected by their job satisfaction. Every once in a while, I will sincerely tell one such employee what a great job they are doing and their beaming proud smile could light up half of Delco! God bless them and God bless the wonderful employers who hire a diverse workforce. We want to remember to patronize those businesses!
However desirable it is to have a diverse local working world, acing a job out in the community is not for everyone with an intellectual disability. I should know because my son is one of those individuals who fares better in the safety and security of a day program. To say that everyone with an intellectual disability has to go out into the community and get a job is downright crazy when many individuals thrive instead in sheltered workshops, day programs and adult training facilities. It’s evidence that we cannot and should not lump everyone together without giving fair and just options to individuals with varied needs and issues.
Pennsylvania has been weighing new federal regulations that promote inclusion of workers with disabilities in competitive employment. In other words, the state has been thinking that all individuals with intellectual disabilities should be out in the community “on the job,” whether working or training. The state considered eliminating workshops and adult training facilities by January 2018. However, last month, after hearing from thousands of upset, angry families, the state Department of Human Services reconsidered and revised the guidelines. Unfortunately, however, the process is not over yet.
Those with intellectual disabilities are just like the general population — individuals. Just like we wouldn’t dream of saying to the general population that working from home or at a job that involves traveling or working in an office or in an outdoor setting is for everyone, so we shouldn’t say that every individual with a disability fits one mold. Saving sheltered workshops and adult training facilities is all about keeping choice and recognizing the individuality of each situation.
Sheltered workshops and day programs support individuals and encourage them to develop appropriate work habits, attitudes and skills in a structured and supervised setting. While performing contract work, individuals learn task completion, safety in the workplace, problem solving, following directions and dependability. Day programs teach a variety of skills and work to maintain skills already learned, as well as enhance the quality of life of the individuals who participate through music, art, volunteering, socialization, community outings and other meaningful activities. Day programs, shelter workshops and adult training facilities all offer opportunities for personal growth, community and vocational experiences and relationship building.
I know my own son didn’t fare well in the structure of a sheltered workshop but does much better in the structure of an alternative day program, delivering Meals on Wheels to seniors as a volunteer and participating in music, cooking and other enrichment classes. Like most others in his day program, he really looks forward to seeing his friends there. It’s what works best for him as an individual, giving him happiness and satisfaction at the end of each day. The local facilities that house the sheltered workshops and day programs provide a clean, safe environment where individuals are treated with respect and dignity in an atmosphere that builds self-worth and encourages learning and friendships. If these local places weren’t beneficial to our children with special needs, we wouldn’t have our kids there. It’s that simple.
Some individuals use the sheltered workshops as stepping stones to outside employment, learning the basics in a private and secure setting before venturing out into the workplace. Others, who may be out in the workplace already, often must return to sheltered workshops after aging or developing other issues that weren’t present when they first ventured into outside employment. Thankfully, the workshops are there for them to fall back on still.
It’s impossible to mandate one rigid rule for those with special needs. Just like seniors have special needs for which there are many options — adult 55-plus communities, skilled care, aging at home programs, assisted living facilities — so should individuals with intellectual disabilities. They need various options. One thing I learned after meeting hundreds of families with children with special needs is that no two are alike and that’s why there is an ISP (Individualized Services Plan) in education and why special ed is tailored to each person as an individual. The same concept should follow them into adulthood. They need choices.
There are 465 workshops and occupational training centers in Pennsylvania. While the state has amended its plan, it’s important for families to be informed and to be proactive. A group of very committed parents in Delaware County has gotten together and will hold an advocacy/information meeting 6:30 p.m. Wednesday, April 26, at St. Anastasia’s Parish in Newtown Square in the social room. The conversation will address the state’s new regulations and try to give families a clear understanding of what it all means. Just because the workshops were given a temporary reprieve right now, families need to stay informed and be sure our legislators know the vital importance of preserving “sheltered workshops” and day programs as an option for our family members who are not ready or able to go out into the community to work for various reasons.
In Delaware County, more than 800 adults with intellectual disabilities attend day programs and workshops. Parents who have sons and daughters attending workshops, including Elwyn’s Bridgewater and Lansdowne programs, the Divine Providence workshop, Handi-crafters and Melmark, have organized this upcoming meeting to help people understand the complex changes ahead. The forum is open to family members of clients at those programs, or any program that is impacted by the new waiver regulations.
The meeting will also be open to support staff in the field and families who have students transitioning from high school and might want to consider a workshop option.
One of the reasons that the meeting is being called is to share and explain the current information and to answer questions and allay parents’ fears. Parents need to know that their adult child’s workshop, which has been a God-send, is not going to disappear tomorrow. I know, as a parent, it is very upsetting and makes me quite anxious, when I don’t understand what is going on. The meeting will help us all understand the current issues at hand and separate fact from rumor.
“We want individuals to make a choice that best meets their needs and we don’t want options taken away from them. It’s wonderful that more individuals with disabilities are finding employment in the community, but other individuals need and want a workshop for a safe, meaningful day that offers them peer interaction, self-esteem from a job well done and a routine they can depend on,” said Trish Cofiell, who has been a tireless advocate for her adult son, Jake. “It’s about person-centered planning and choice.”
A small panel of experts and advocates will provide families with an update on the waiver regulations at both the federal and state levels and how they impact their sons, daughters and family members who choose a workshop setting for a safe, meaningful day.
The panel will include attorney/advocate Ted Schwartz, who will update families on developments in the state of Pennsylvania regarding the federal/state waiver regulations, and attorney/advocate Dennis McAndrews, who will present information on drafting an ISP that reflects a person’s preferences, including a safe, meaningful workshop setting, some type of employment in the community or a combination of both.
The information meeting is free and put together by this group of informed and dedicated parents. Parents of children with special needs are dynamos when it comes to fighting for their children — don’t ever underestimate them. To gauge seating and handout material, people are asked to RSVP by sending an email to firstname.lastname@example.org. People can also email their questions in advance.
It’s easy to get laid back and comfortable by what we already have, but when there’s an imminent threat of it being taken away, it’s time to get re-educated and ready to fight for what we believe in, what we know works because we see it working every day right before our eyes. We don’t want someone in Harrisburg telling us what is and isn’t right for our family member.
After taking a second, more realistic look at the proposed waiver regulation, Pennsylvania Human Services Secretary Ted Dallas put out a letter saying, “The Department of Human Services received thousands of comments regarding the sheltered workshops. We heard loud and clear the value of having choice.”
Dallas assured families by saying, “DHS is not closing workshops or adult day programs for individuals with intellectual disabilities. We are proposing changes that allow providers to modify their service models over time to support people in integrated community settings.”
He also stated, “Each individual will have the choice of whether or not to participate in a community activity, as well as the amount and frequency. This determination will be made with their ISP team.”
His words are a reminder to all families of an individual with special needs to pay very close and careful attention to the wording and goals on their family member’s ISP.
Sheltered workshops aren’t for everyone, but neither are adult training facilities, community jobs and alternative day programs. It’s not a one-size-fits-all mold. This is America, and I wouldn’t want the government to tell me where I should or shouldn’t work. Maybe that’s why it just seems plain wrong for those with intellectual disabilities to have their options curtailed. It should and needs to be all about choice.
Readers can reach Peg DeGrassa at email@example.com.