Living with and Developing Services My Way: My Participant Directed Services Story
by Tanya Teglo
As a consumer who uses Participant Directed Services, Services My Way to be specific, my role as an employer as well as a consumer who is striving to develop the program further can sometimes be a particular challenge in the quest for independence and freedom. I have been a participant in the Office of Long Term Living's Services My Way program under the attendant care waiver for approximately five years. In that time, I have not only had the chance to see what the program is capable of on a surface level but have had the unique opportunity to develop a workgroup with various entities to try to work on improving Services My Way for participant use as well as work on the elements that can make Services My Way rather tricky.
I wish I could say that within that time I was able to develop a system that was thriving right now, but much to my chagrin that has not been the case as of yet. One of the obstacles that has been holding up progress I believe is how slow change actually comes on governmental levels. They have so many checks and balances to get through that it may take several years to see one simple change come into play. For someone like myself who may be considered somewhat of a firebrand, understanding that timetable while knowing that people actually need change to take place now can be a tough pill to swallow.
What has been particularly hard for me to accept is realizing even though these workgroups are allowed to be created (and the Services My Way workgroup may be they first time a consumer, myself, has ever actually been the one to create the concept and have control of the entities that are at the table and actually personally formulate the agenda, etc.) that for all intents and purposes the workgroups are still simply viewed as advisory without much power to actually change policy. Through this experience I have come to understand that it is not the entity, OLTL, that can create the change to give consumers more control over their services, that change and independence everyone craves has to be given the blessing of those higher up, like officials from CMS (the Centers for Medicare and Medicaid) who in turn have to get permission from Congress, so the answer as to why the consumers on the ground do not see an increase in their independence and choice is because there is an incredibly complicated chain of command in the government that someone would have to spend a lifetime working in to really see these changes occur. I am not saying that the entities that I have had the chance to work with do not want to see growth and independence, I think they do, but it’s a matter of getting the authority to do so which makes it frustrating on all levels for everyone. What we really need is a cultural shift and mind change throughout this entire country to make independence truly possible.
Currently with the COVID-19 crisis, as a nation and a world we have seen just how difficult and mind blowing it can be for a governmental system and healthcare to run efficiently and that effect trickles down on everyone. As an employer who maintains their own work force and is trying to keep their employees and themselves safe it is a particular challenge because although I run my workforce independently there has been little guidelines issued on how to keep everyone safe in the midst of the COVID-19 crisis, employers everywhere in every entity have developed their own system as to how they are interpreting governmental guidelines but the average consumer/employer has not been told what to do except "wash your hands and disinfect surfaces" we have not heard yet when and if independently employed caregivers will ever be given PPE (right now it will only be issued if someone has COVID-19) which is a bit ironic because the governor himself has stated that we should treat everyone as if they already have it and if the idea is to stop the spread, why isn’t there at least a waiting list created where people can sign up so the PPE can be issued and why hasn’t anyone given employers that use Services My Way the ability to use their budget in order to purchase this needed equipment at this time.
If it is about independence, choice and responsibility why aren't we given the authority to be able to make these choices as an employer? This is an issue that I believe an open budget model should be able to solve responsibly but one does not have the authority to do so, what really needs to be done for a model like Services My Way to work effectively is the employer has to be given the ability to at the drop of a hat be able to purchase goods and services when necessary as long as the savings and funding is available. This is something I have always wanted to work towards with the Services My Way model but have not been able to accomplish yet. But mark my words just like in the song "With Little Help from my Friends" by the Beatles, "I'm going to keep on trying" and maybe someday when I am old and grey I will actually see the independent world that we all deserve.
This project is supported by a grant from the Pennsylvania Developmental Disabilities Council; in part by grant 1901PASCDD-02, from the U.S. Administration for Community Living, Department of Health and Human Services, Washington, D.C. 20201. Grantees undertaking projects with government sponsorship are encouraged to express freely their findings and conclusions. Points of view or opinions do not, therefore, necessarily represent official ACL policy.