Not for the Faint of Heart
Keeping Travis’s services going is a never-ending project. It would be easy for him to slip through the cracks without constant advocacy. Travis’s case manager tells me that I am the only parent on her caseload that takes on the level of advocacy that I do. His case manager is an important member of Team Travis. Let me tell you a bit about her role. First I need to give you some background information. This information may be a refresher for some readers.
Colorado Department of Health Care Policy and Financing (HCPF) is the state agency that oversees Colorado’s Medicaid program and Home and Community Based Services (HCBS) waivers. There are two different waivers offered to adults with intellectual/developmental disabilities (IDD). Certain qualifications must be met in order to participate in the program. The level of care needed is determined by a functional needs assessment.
The DD waiver is a residential program. Individuals choose a service provider agency. The agency is responsible for helping their clients find living arrangements, ranging from host homes to group settings. In our community host homes are pretty much the only option. Provider agencies cannot afford to staff group homes with the current amount of state funding.
The SLS waiver offers supported living services for IDD individuals that are responsible for their own living arrangements.
There is a long waiting list for these waivers in Colorado. Travis was placed on the waitlist in August of 2011. He received a letter in March of 2015 informing him that the waiting list for Medicaid funded Supported Living Services was being eliminated. Meaning that all of the individuals on the list were being offered enrollment in the program in the order they were put on the list.
We were excited to hear this. We had been told that it would likely take Travis eight years to make it to the top of the waiting list. We began the enrollment process right away. It took several months to get through the process. Getting hundreds of individuals off the waiting list at the same time inundated the case management agencies. At the same time, there were not enough service provider agencies within the local communities to offer services to the influx of new clients. Both the case management agencies and the service provider agencies had to hire and train new employees.
Case management agencies are contracted on a regional basis with the state to assess participant needs, provide referrals, develop service plans, track delivery of services and oversee participants experience with the program. Travis’s case manager works for our local management agency and performs these tasks.
Before enrollment can be completed a Supports Intensity Scale (SIS) assessment must be done. This scale is used to determine the support an individual needs to be successful. This assessment is completed in a 2-3 hour interview meeting, where at least two people who know the individual well, answer questions about their support needs. Trained assessors facilitate the interview. The questions cover areas such as medical care, daily living skills, behavioral challenges, ongoing learning abilities and employment.
There are six levels on this scale with level six being the highest needs category. The Support Level is a numeric value determined using an algorithm that places clients into groups with other clients who have similar overall support needs. The Support Level is used to determine which standardized rate will be reimbursed for services to the individual. The Support Level also determines the Service Plan authorization Limit (SPAL). Basically, this is the designated budget amount for purchasing services to meet, in this case, Travis’s needs. Travis scored at a support level three. There is an annual Service Plan meeting that Team Travis attends. We talk about what is going well and areas where he needs additional support. The budget is allocated based on his current needs.
This process can be frustrating. First, getting services set up is only successful when you have a good case manager. The most diplomatic way I can put this is that some case managers are better than others. Travis’s current case manager is awesome. Which means she will probably get promoted and we will lose her! She has developed a great working relationship with Travis. It’s really quite simple. Just take a few moments to pay attention to him and his interests. Watch a few of the videos he made on his phone. Give him some feedback. Unfortunately, very few people take the time.
Another frustration is that not all of the provider agencies offer every available service. And even if they do offer a requested service, they may not answer the Referral for Proposal (RFP) for services. When a provider agency receives an RFP, they may not be able to take on a new client at that time based on their current level of clients and employees. Or they are behind on paperwork.
Even when services are in place and going well, issues arise. Travis had a provider that he worked with on homemaker skills that quit his job with the agency. The agency told us that they would hire a new employee to take the shift. And then we never heard back. When I contacted them a couple of months later they said that they meant to let us know that they closed Travis’s file. For real.
It does get complicated. Some of the services that Travis has received or still receives are as follows:
Homemaker services - these services are designed to help an IDD individual maintain a healthy and safe home environment when they are unable to manage these tasks. Travis gets help with meal preparation/shopping and light housecleaning.
Mentorship - these services are designed to help an IDD individual promote self-advocacy and understand complicated health and safety issues.
Community Connections - these services are to support the IDD individual with abilities and skills needed to access typical activities of community life. These services give opportunities to create and build relationships and natural supports in the community. The activities and environments are to help individuals gain skills, appropriate behavior, greater independence and personal choice. Travis has participated in activities such as bowling and Tae Kwon Do in the community.
Assisted technology - Travis has a medication box with an alarm to remind him when to take his medications. He has a nurse that comes by once per week to fill it with the appropriate daily medications.
Supported employment - ongoing supports that enable participants to perform in a regular work setting.
Behavioral services - individual/group counseling, behavioral interventions, diagnostic evaluations or consultations related to the individual’s developmental disability and needed to acquire or maintain appropriate interactions with others.
Part of the reason it can get complicated is because you can have a service plan in place. And then something comes up and you have to figure out how to fit something new in the plan.
This happened to Travis. He had been a client with Division of Vocational Rehabilitation (DVR) for three and a half years. Travis was having great difficulty keeping a job. I have detailed his past job experiences in previous blogs. DVR contracted with a provider agency to perform an assessment to determine what Travis’s needs were with regard to finding a community position that would be a good fit for him.
Travis was being assessed in a position where he was being taught to manufacture jewelry. The assessment was approved for 29 hours. It took Travis six months to get the time in as he didn’t like working if he wasn’t going to get paid. At the end it was determined that Travis was not ready to work in a community position. The provider agency shared that they were open to Travis staying on in the current position with a 1:1 job coach to teach him job skills. DVR will only fund an individual if they are training in a community position and closed Travis’s file.
Which left Team Travis to figure out how to fund the 1:1 job coach. Which bills at approximately $55/hour. No, this is not a typo. The only way to fit this within his budgeted funds was to drop other services. I felt the job coaching was important because being able to work is important to him, and therefore his team. I picked up the slack on the meal preparation, shopping and other supports.
Travis held this position for well over a year when Covid-19 came along. The jewelry store closed during this time, and this job ended up being eliminated. Travis isn’t any more employable after this experience.
We are currently adding past services back into his plan. He has been meeting prospective providers online on Zoom. His new provider for homemaker services started working with Travis last week. They made lasagna. This week they are making manicotti.
Supported employment still fits in the plan. The problem is that the provider agency is taking him to apply for community jobs without regard for his needs. Travis told them he wanted to work at McDonald’s or 7-11. He has a friends that work at those places. He is unable to work a register. He doesn’t do well with fast-paced, loud, busy places. This agency knows this. This is the same agency that said he needed 1:1 support to work and now they are taking him to apply at 7-11? I asked them to take him to Halloween stores. His most successful job by far. It didn’t happen. This agency hired a new supported employment employee that did take the time to come and meet Travis. I had to laugh at his email to me afterwards.
I found it to be very diplomatic. “Had my meeting with Travis today. I think it gave me good insight into Travis’s needs and strengths firsthand. It may be a difficult road, but I already see some shifts in strategy…”
Travis had received supported employment services in the past with another provider agency. He still receives community supports with this agency. I was responding to an email from this agency that was not job related and began to vent about how the system is broken and used Travis’s job searches and experiences as an example. The director of the agency was nice enough to respond and said that she would forward my comments to their job development person.
The gentleman in charge of job development contacted me and said their agency was starting a new job program. It’s called customized employment. They are currently training an employee to develop positions. This person will meet with an IDD individuals to figure out what their strengths and weaknesses are, and where they might want to work. Then they will reach out to businesses and tell them about the IDD individual and their strengths, and ask if the business might be able to customize a position for this person. For example, could 7-11 employ someone for just a few hours per week that only stocked shelves.
I have to be honest. This is what I thought DVR and provider agencies that offer supported employment were supposed to be doing all along. I thought DVR and these agencies had already built community relationships with local businesses to employ IDD individuals. I was shocked when Travis began his three and a half year experience with DVR to find that this is not at all the case.
I asked the job development person what I needed to do to get Travis signed up to participate in this program. He responded that the program was going to be funded by DVR and that Travis would need to apply for DVR services. Deep sigh.
Travis’s caseworker did the paperwork to make the referral to DVR. DVR sent us the entire application. We participated in an online meeting with the intake person. Apparently we have to get all the doctor forms again, stating his diagnosis. Good thing I save every piece of paper involving Travis’s story. I have a copy of the last application. Bureaucracy at its finest.
I specifically asked about the customized employment program. Apparently only the one provider agency will be allowed to run the program. DVR is participating in the training of this employee. A very limited amount of individuals will be able to participate in this program because it is beginning with just this one trained employee. Travis may or may not be accepted to the program.
What happens when this employee quits?
Has it really not occurred to anyone that they should train more than one person? Not only will a handful of individuals be left without job search support, but also, what about economies of scale? Another deep sigh.
Keeping the waiver services going is one small piece of my advocacy for Travis.
Advocacy is not for the faint of heart.
“Advocacy, at its core, is an exercise in empathy” - Samantha Power
Why Advocate? “Unless someone like you cares a whole awful lot, nothing is going to get better. Its not.” - Dr. Seuss, The Lorax