by Pamela Fields, CEO, ATECH
As with other direct-care service organizations, Midstate Arc and ATECH share in the need to reach 100% compliance with the Centers for Medicare and Medicaid Services (CMS) Home and Community Based Service (HCBS) final ruling. This ruling is tantamount to a sea-change for agencies in that we must now empower and assist the individuals in our care to live more independently, as opposed to providing care that for lack of a better term, has been delivered within a closed system. This change has provoked much anxiety, fear and financial worry among caregiving agencies, but my position is that we have the tools and technology at our disposal to help our agencies make this change. We can continue to provide top quality care and reach compliance – we simply need to be smart about it and use the explosion of technology to our advantage. In this article, I will explore 5 ways that assistive technology can help organizations meet the challenge of the March 2023 deadline safely, effectively, and efficiently.
Understanding that people with intellectual or developmental disabilities (IDD) face a higher number of health disparities compared to both nondisabled people and people with other disabilities is where these recent CMS changes begin. Recent research has shown that health disparities for people with IDD are only in part due to their disabilities; instead, determinants including environmental conditions, access to healthcare services, and social exclusion, all play a role in overall health for those with IDD. In fact, the health and quality of life of individuals with IDD is largely impacted by, and dependent on, the government services they receive.
In this light, CMS has created a list of specific requirements promoting independence for individuals, as well as measures to support direct care workers. These new requirements must be met in order for funding to continue. Medicaid funds over 57% of all HCBS spending, and this money in turn accounts for nearly 75% of revenue for many agencies. The financial need for agencies to comply with the new ruling is great, and the need to provide these types of services to individuals with IDD is even greater. Assistive technology hits all the touchpoints to getting to compliance in supporting employment and to enabling individuals to access the community. How can assistive technology help agencies to meet the HCBS requirements?
Chart source: Truven Health Analytics Report, 2017
Apps Allowing Community Access
Historically, individuals with IDD have been gifted the community. What I mean by that is that in the past, service providers went out into the community, pulled together resources, and then came back into the group home and shared this with the individuals, essentially gifting them the outside experience. With the new rule changes, individuals will now have direct access to the community. The additional change that we need to address is that many individuals with IDD lack many of the skills they need in order to successfully navigate their new reality. These skills may include reading signs, driving, or understanding the steps needed to complete an errand like picking up a prescription at the drugstore.
This is one area where assistive technology can be used on multiple levels. Using apps like Lyft or Uber, individuals can use an app on their phone to request a driver to take them to the drug store, to an appointment, to church, or to some other community location. Once an individual is shown how to use the app, many of the features of the app assist them in a comfortable and controlled manner.
Because the individual is requesting a ride through an app, and paying the tip through the app after they get out of the vehicle, the experience is much less intimidating for them than taking public transportation. In fact, at our agency, what we’re seeing is that the people who are using these services are now using them in combination. They are deciding on their own when to use public transport or when to use a car service. They are starting to maneuver these kinds of situations themselves, whereas in the beginning, they either took only public transportation or only car services. There was a learning curve at first, of course, for both the staff and the individuals, but on the whole it’s been very positive for everyone and we’ve seen a lot of growth.
Tracking and Security
As agencies, in order to provide individuals with independence we need to provide service and safety, but without a human being providing direct service all the time. Assistive technology can bridge this gap between direct care and remote care. Using tracking devices together with communication and security software, agency staff can monitor where an individual is within the community at all times. Should the individual need a ride or miss a bus stop, communication can be established instantly via a phone call, text, or smartwatch and in-person assistance can be provided. The individual can feel confident that they are supported wherever they are, and the staff can feel confident that they are in touch at all times.
Looking at this from an agency standpoint, we’re already in a labor shortage, and it’s my view that this shortage will continue. Smart use of assistive technology can take the burden off of in-person staff while providing the appropriate level of supervision either within a group home or out in the community. Allowing staff to remotely monitor individuals gives agencies more flexibility in staff coverage while also giving real-time feedback to in-person staff and the individuals receiving care.
For those with IDD, doing something as simple as answering the door or answering the telephone can be intimidating. For many agencies, actions like these have been typically handled by in-person staff because it was simply faster or easier for them to do it. With the new ruling, the individuals are trained and supported to complete these daily tasks, as well as encouraged to mingle with their neighbors and get out into their community.
Many agencies, including ours, began these changes back in 2014. To be honest, for us it’s been a constant project, with repeated training needed, and much backsliding. I say this with an eye to what’s currently happening in the wider world with not only the original 2020 pandemic, but now the Delta variant surge impacting all of us. It has been very difficult to promote independence among these individuals, as well as among the staff, simply because people frequently fall back into old patterns of behavior. With the pandemic shutdown and the need for social distancing, the fear of contracting the virus is very real and understandable.
Assistive technology can help, however. Using a video doorbell allows individuals to see and hear someone at the door without actually opening it. Using an online portal to connect with others for birthday parties or making a video call is also a positive interaction for everyone concerned. Training and supporting individuals to use these types of technology helps to ease fears while keeping them connected to friends and loved ones, even during the difficult times we currently live in.
Assistive technology has helped our agency with our staff in that we’ve been able to conduct group trainings online. We have held training webinars and then followed up afterwards with in-person demonstrations to reinforce the learning. The ability to hold a portion of the training remotely and on a flexible schedule has also been very helpful in managing our overall staffing.
The new service direction promoting independence requires changes for the staff as well for the individuals receiving support. As I mentioned, we have been working with our staff since 2014 and what we’ve seen is that initially, there was a lot of anxiety and fear around the changes. Whenever something changes, there’s a level of newness and fear. The challenge for us as agencies is to address this fear, and to provide continued, consistent training on the new service direction. We’ve found that we’ve been most successful by a constant gentle pressure to change the culture and move the team forward. Without consistency, people revert right back to their old behaviors.
From an ideological point of view, if you look at history, most cultures and societies that have been marginalized have had breakthroughs in moving forward. People with IDD have been held back more than any other community. In the past, people with IDD were literally locked away in institutions and faced discrimination of every kind. In many ways, these individuals are like a little paper boat tossed in the middle of a storm. Historically they have been at the mercy of others. If a service provider said they had to do something they had no choice. If a funder said they had to do something, there was no choice. Individuals with IDD have never had a voice; they have always been in someone else’s control.
We’ve done tons of training with our staff to get them to change their thinking and become aware of their own actions and thoughts, but it’s a work in progress. This kind of major change is not a one-and-done kind of thing. It takes continual training to keep it top of mind. Change is hard and it takes work.
Technology has allowed us all to communicate with each other in ways that were impossible only a few years ago. Using video calls, texting, email, or portal connections, assistive technology has allowed families to stay in touch with their loved ones despite the restrictions of the pandemic. We’ve been able to handle staffing crises, transportation emergencies, and regular day to day activities because of the advanced communication tech we have installed within our group homes. We rely on this technology not only to communicate with our team, but also to communicate with the families and other caregivers in our network.
The new rules are impacting individuals, staff, agencies and families and guardians. Many family members of the IDD individuals are very anxious about the changes, mainly because it feels like this change is adding a higher level of risk for their loved one. When someone lives in a group home, there’s a certain level of risk, but it’s a closed system, if you will, where everything has been under control. With these new requirements, it introduces an element of the unknown and adds a possible risk of being out in the community. Many families are resistant to these changes.
To go back to the analogy of a ship tossed on the waves, the individuals are mainly happy to go with whatever level of independence we can help them get to in a comfortable way. Their families are resisting the new changes due to their fears, but the agencies need to make the changes to remain in compliance. Once again, the individuals are caught in the crosswinds. It’s my belief that what CMS wants is to get the individual back in control of the boat. We can use assistive technology to address the fears and anxieties of families and caregivers, supporting everyone through the transition.
Assistive technology is a critical tool that can and must be used to help agencies move forward. Whether used for community access, tracking and security, promoting independence in general, training, or communicating, assistive technology is here and at our disposal.
As I see it, the CMS rule changes coming in the near future are an opportunity for us to break people with IDD out of the marginalization frame where they’ve been locked. It will require consistent support for the individuals to make these changes for themselves, and the same is true for agencies.
As the direct care system is starting to evolve, we need to push ourselves to be ready. We will backslide, but we need to keep pushing forward. In this technological age, it’s the perfect storm. It’s the perfect timing to use assistive technology to help move forward. We have all these converging pressures: the pressure from CMS for HCBS compliance, the pressure that there’s not enough funding in the system, the pressure of a staffing shortage, and on the other hand we have all this technology booming all around us.
Our challenge is in how we will use technology: will we go with the old thinking of using it to put barriers in place, or will we use technology to get around and overcome the barriers we’re facing?
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