We’re a Team
Last week I explained the process the State of Colorado uses to evaluate the level of support that an individual with intellectual/developmental disabilities needs. There are six levels of support, with level 1 needing the least amount of support and level 6 needing the most. Travis’s level of needs put him in Support Level 3.
Each level is assigned a budget. Each year Team Travis meets for his Long Term Care Service Plan. Travis and the other team members determine what his needs are and the best way to address them.
While Travis was on the waiting list he had a case manager at Foothills Gateway that handled cases that were on the waiting list. As soon as he came off the waiting list he was assigned a new case manager. The case manager’s roles and responsibilities include:
Coordinate needed services.
Communicate with service providers regarding service delivery, and concerns.
Review and revise services, as necessary.
Notify clients regarding any change in services.
Notify clients when services are denied, suspended, terminated or reduced.
Document, report and resolve client complaints and concerns.
Report abuse, neglect, mistreatment, and exploitation to the appropriate authority.
Travis was given a resource list of qualified providers. The timing of Travis’s start of services was complicated by another factor. In the past Foothills Gateway was not only the Community Center Board (CCB) for our county, but also a provider of services. There were a few provider agencies available to provide services with Foothills Gateway being one of them.
The Federal Centers of Medicare and Medicaid Services was requiring the State of Colorado to institute Conflict Free Case Management (CFCM) as well as other cost efficiency measures. When this plan was implemented it meant a total restructure of Foothills Gateway. Foothills Gateway sent out a letter to families at the time detailing their concerns. Foothills Gateway believed the changes would have a negative impact on people receiving services through them.
Their letter states, “The magnitude of the changes being considered by Colorado will be difficult to implement without major disruptions to current services. The state has indicated that the current system will have to be dismantled and new, multiple systems built to meet the goal of CFCM. Therefore, Foothills Gateway would no longer exist as it does today and the service provider you have come to rely on over the years to provide exceptional services may be broken apart and possibly replaced by multiple agencies”.
Foothills Gateway wanted parents, guardians and family members to reach out to the members of the Colorado legislature and also members of Congress to let them know that we opposed the restructuring of the CCB’s. Per Foothills Gateway, “We hasten to point out that the majority of family members in Colorado do not feel that a conflict of interest has been an issue and the State has not documented ANY occurrence of a conflict of interest investigation concerning a CCB”.
I did not reach out to our members of Congress. First, I did not believe it would make a difference. It was a required change at the federal level. My understanding is that the state has to follow federal rules in order to receive Medicaid monies from the federal budget.
Second, I was a Business Manager at a provider agency for a couple of years. This agency offered many of the same services as Foothills Gateway. The state only funds a given amount of individuals for services. In essence, the provider agencies compete to offer services to an individual. Was it a conflict of interest to manage a client’s services and also compete with other agencies to provide the services for the same client?
When an individual comes off the waiting list they have an Initial Service Plan meeting to identify the services needed. A Request for Proposal (RFP) is sent out to the provider agencies specified by the client. Each agency responds to the RFP if they have the availability to serve the client’s requested supports. I trust that Foothills Gateway sent out the RFP’s. But when presenting the various provider offerings to the individual, Foothills Gateway was including themselves in the offerings. Which makes sense. They were a provider.
I believe that an individual might choose Foothills Gateway over another agency because they already had a relationship. And it would be one less relationship to manage. During Travis’s Service Plan meeting, which I will get to in a minute, he was offered Supported Employment Services through several agencies. And he chose Foothills Gateway. Because he had a relationship with them. Was familiar with the staff and the building. It was the path of least resistance.
If a company wanted a building built they would send out an RFP to a list of qualified contractors. What if one of the bidding contractors was allowed to present the bids of all of the other contractors in addition to his own? And he was hoping to win the bid. Conflict of interest?
My belief at the time was that family members in Colorado did not feel that there was a conflict of interest because they didn’t see one. They were given a list of agencies to choose each support from and they chose. It probably did not enter their mind that the CCB would be managing the services provided, and maybe provided by them. What if there was a problem with a service the CCB provided? Would they report themselves?
I saw it as being a complicated issue, but probably because I was the Business Manager at a provider agency years before Travis was even placed on the list for services. So I saw the issue through a different lens than others that were choosing provider agencies may have.
There is a reason I brought this up! Last week I talked about the issue of provider agency availability. When Travis came up on the list it was simply a crazy time. The CCB was being dismantled. Fifteen hundred individuals were coming off the Supported Living Services waiver list. It took time for new provider agencies to form, not only to serve the clients transferring from the CCB, but also to serve the individuals coming off the waiting list.
I am sure you can imagine the amount of paperwork necessary to set up a provider agency that bills Medicaid for all of their services. And also imagine the amount of time it might take the government to get to and approve the necessary applications.
Team Travis did meet to identify his needs for his Service Plan. But getting the supports in place was a whole other story.
Here is a list of the Supported Living Services (SLS) Waiver Service Categories:
Personal Care - Assistance to enable participants to accomplish tasks that they would normally do for themselves if they did not have a disability. (Travis is physically able to take care of hygiene, just needs reminders to do, so this is not in his plan.)
Respite - Short term basis for relief of caretaker. (This would only apply if Travis were living at home. So no respite for me!)
Homemaker-Basic/Enhanced - Travis has 4 hours per week of housecleaning. Travis needs support with maintaining his home, keeping it sanitary and free from potential health and/or safety hazards.
Home Health - Travis had a nurse come once per week when he was receiving the Community Mental Health Supports waiver. This service transferred to his I/DD waiver so he has had the same nurse coming for several years. The nurse fills his medicine lock box and makes sure that Travis is taking his daily medications regularly.
Mentorship - Promote self advocacy, interviewing potential providers, understanding complicated health issues…
Day Habilitation/Specialized Habilitation - Community activities, facility based program sites or supervised work settings, assistance with acquisition, retention, or improvement in self-help, socialization and adaptive skills. Focus is on enabling the participant to attain their maximum functional level or be supported to gain an increased level of self-sufficiency in self-care.
Supported Community Connection - Supports the individual in the community to facilitate and enhance community integration. Support may be provided on an individual or group basis. (Very few providers will offer individual support because they cannot make any money with 1:1. Which creates a problem. Travis does not do well in the group community settings. Oftentimes he is higher functioning and so gets bored. Or they are doing an activity that he has zero interest in. Example - basketball at a gym.)
Supported Employment - Must apply through DVR first. Ongoing supports that enable participants to perform in a regular work setting. May be a community job or work crew/enclave of 8 or fewer people.
Non-Medical Transportation - To gain access to waiver and community services.
Behavioral Services - Individual/Group counseling, behavioral interventions, diagnostic evaluations or consultations related to the participants developmental disability and needed to acquire or maintain appropriate interactions with others.
There are a few other services such as specialized medical equipment and assistive technology available for individuals with higher needs.
The goal at the Service Plan Meeting is to determine what Travis’s needs are and what supports he may be interested in, within his state allocated budget. Obviously we determine what is a must in the plan. For example, the nurse. His nurse keeps the key to the med box and keeps track of the prescriptions. The nurse has direct contact with the psychiatrist.
Having a housekeeper was at the top of the list. When I visit with Travis during the week I do not want to clean his house. Initially, I visited with Travis a minimum of twice per week. We would spend one day doing what I call, “taking care of business”. Shopping, errands, doctor visits… In the beginning I made sure to also spend a day with Travis doing fun stuff. Going swimming, to the movies, or out to lunch. But eventually I phased that out. Because he wanted to bring a friend. Or friends would call and he spent his time with me on the phone with them. He would ask me if we were almost done.
Which was a good thing. The idea all along is for him to become independent of us. And one of his friends is a better choice to go down the slide at the city pool than I am. Trust me. Anyway, it is way more cool than hanging out with your mom as well.
Travis requested support with going out into the community. One of his goals was to have a minimum of one community visit per week that included physical activity. Including activities such as swimming, bowling, and frisbee golf.
The early years of his Service Plan did not include much as far as supported employment. As stated earlier, an individual must apply through the Department of Vocational Rehabilitation (DVR) first. Travis was already on the waiting list for DVR services when we met for his Initial Service Plan.
As far as behavioral services, Travis participates in individual counseling. Travis has a tendency to want to counsel others during group counseling, rather than let the actual counselor run the session. Which can be frustrating for the group because Travis will point out issues that others have even though he has the same ones!
It is the job of the case manager to put the requests into the system and determine the annual cost to determine if the services fit within the budget. The case manager shares which provider agencies offer the requested services and I help Travis to decide which ones should get a RFP.
In a perfect world all the requested services would be put in place and Travis’s needs would be met. But we all know the world is not perfect. It was difficult to get services set up because provider agencies were not responding to the RFPs. Because they didn’t have the capacity with all the individuals coming off the waiting list and the CCB no longer able to provide services.
The first couple of years that Travis was supposed to be receiving supports through the state waiver he simply fell through the cracks. At the time I believed it was because he had me to fill in the gaps. I believed his case manager at the time was focusing on clients that did not have anyone else available to help them. Looking back I still believe that was part of the problem getting services put into place. But there was a couple of other factors,
One was that his case manager at the time was not sitting on the right seat of the bus. He had a huge heart, but lacked follow through with the case management and paperwork side of the job. But more importantly, I have found over the years that the cracks in serving individuals with disabilities are quite wide. Allowing many to slip through.
During the first couple of years of services I realized that Team Travis was made up of pretty much me and Travis. Don’t get me wrong, Tracy is a huge part of the picture. But as far as attending meetings, interviewing providers, advocating for Travis’s needs. That is all me. It’s a full-time position. I’m good at it. Juggling the paperwork, handling the finances. And nobody loves that boy as much as I do.
Other team members came and went. But Travis and I? We are the backbone of Team Travis.
“We’re a team. Whatever you lack, I got you. We will balance each other out. Minor setback? Guess we'll make a major comeback. Bad day? Well, I promise you a better night. You need support? I’ll be your backbone. I’ll keep you motivated and at the top, always. As long as you appreciate me and remain consistent you don’t ever have to doubt my loyalty. You got me. I got us.” - Author Unknown