Another One Bites the Dust
I’ve mentioned before that Travis was put on several waiting lists. In my blog, “Turtle Shell” I told the story of how his name worked it’s way up to the top of the list for a housing voucher. An individual can only add their name to the housing voucher list when the list is actually open. Once approved to be added to the list it can still take years to receive the voucher. Voucher received. One less waiting list.
Travis had been on the waiting list for the Colorado Intellectual/Developmental Disability (I/DD) Medicaid waiver for three and a half years when the state decided to eliminate the Supported Living Services (SLS) list. Meaning that all individuals waiting for SLS were offered enrollment in the program. This was great news. The expected wait for services when Travis was approved in 2011 was ten or more years. There were hundreds of individuals on the list. Colorado had found a way to budget the money necessary to offer services.
It’s important to note that this was only for the SLS waiver. This waiver is for individuals with intellectual/developmental disabilities that are able to live on their own with supports. There is a separate comprehensive waiver for individuals that will need more support, such as living in a host home. This waiting list currently has over 3,000 individuals on it. The average cost per individual receiving SLS services is in the $17,000 per year range. The average cost of serving an individual receiving comprehensive services is considerably more. I recently read an article that put that number at $79,500 per individual, because they require 24/7 care in a group home or host home. The estimated wait on this list is eight years.
Per Taylour Kumpf at Mosaic (a non-profit agency that provides services to individuals with intellectual and developmental disabilities (I/DD), “To live meaningful lives outside of institutional settings, many people with I/DD opt for home and community based services (HCBS). HCBS can include care coordination, chore assistance, home health visits, meal assistance, adult day services, respite services for family members, emergency monitoring, educational or employment support, home accessibility modifications and more.”
Kumpf goes on to say, “In order to access HCBS, however, people with I/DD have to apply for Medicaid waivers and then wait, sometimes for years. What is a Medicaid waiver?
Medicaid’s standard coverage encourages institutionalization for people with I/DD instead of community-based or home-based care. Medicaid is required to cover people in skilled nursing facilities, that is, institutions. It is not required to provide services to people with the same disabilities who live at home on their own, or who want to be served in their home communities. This bias toward institutionalization, as well as a growing understanding that institutional care is generally costlier than HCBS for individuals with the same level of need, led to the creation of federal Medicaid rules that allows states to establish Medicaid HCBS waiver programs.”
The waiver program varies by state. The waiver provides services and supports to individuals with I/DD allowing them to live within their community. It’s not just about the cost efficiency as compared to living in an institution, it’s also about the individual’s quality of life. That is why we are so determined to help Travis live in his own home. It’s because that is what he wants. It is important to him. We were doing what we could but we needed help.
There are more individuals needing services and support than there are available waiver slots. Availability is a function of state funding. Once an individual gets to the top of the list, the issue becomes more about capacity. In other words, finding a provider. Provider agencies have to run a very tight ship. I know this not only as Travis’s mom, but also as the Business Manager at Mosaic for a couple of years.
Let me explain. Medicaid is the only funder of I/DD services. Medicaid provides 90-98% of the revenue to providers. Per www.alliancecolorado.org, “I/DD providers are disproportionately affected by economic factors such as the rising minimum wage and inflation. In 2008, the baseline rate structure for I/DD services was set at only 76% of the cost of doing business. Since then, rates have continued to lag far behind inflation and increasing costs. For example, in the last five years, the Colorado minimum wage has increased 34.7%, while I/DD waiver rates have increased only 11.6%.
These decades-long structural financing issues and new challenges are placing strain on the service system, and most importantly limiting access to services for Coloradans with I/DD and their families.”
Now you can better understand a couple of things. Why we were so happy that the state was at least able to eliminate the wait list for the SLS waiver. And why we have had so many issues with provider agencies. Some do not have any availability. Or they will choose to only serve the “easier” clients. Clients that have less challenging behaviors in a group setting. Or why employees may not have proper training. Or maybe enough training. Because there is not enough money. The training is a continuous expense. Employee turnover is high.
I remember a mom coming into my office when I worked at Mosaic. She complained to me about the turnover of employees at the group home where her child lived. I shared with her that I have an I/DD son. I told her that raising and caring for him was the hardest thing I had ever done. She said, “Me too”. I told her, “Imagine getting paid minimum wage to do what we just said was the hardest thing we had ever done”. Many employees moved on as soon as they found a less demanding job for the same amount of pay. For many employees it was just a job. We continue doing the hardest thing we’ve ever done because that’s the kind of love a parent has for a child. Would we choose it?
I will tell you in upcoming blogs some of the experiences that Travis has had with various provider agencies. He has endured a lot of hurt. That is why I advocate so hard for the providers to do better. To be better. I would like to think that I am motivating them, teaching them. But they probably see me more as a thorn in their side.
The enrollment offers were distributed in order of the date an individual was added to the list. Which did take several months. Foothills Gateway, the Community Center Board (CCB) for our county had to go through the many step process to enroll each individual. The local agencies that provided various services had to step up their game. They needed to hire additional staff to work with the additional clients.
Each county in Colorado had their own CCB working on enrolling the individuals that lived in their respective county. If I remember right, I think the total amount of individuals coming off the state list and enrolling in services was around 1,500.
As Foothills Gateway worked their way on the list, Travis continued to struggle with living on his own. We gave him as much support as possible, even hiring a live-in aide to stay with him. Our major concern was Travis’s inability to keep himself safe. On several occasions when I would stop by his home there would be people there that I did not know. It was hard for an aide to help with this situation because Travis would tell him that the people coming by were his friends. Because Travis did believe that to be true. And then these friends would bring others around. Food disappeared. Travis’s personal items came up missing.
We shared our concerns with Travis’s case manager at Foothills Gateway. She was able to bump Travis to the top of the list for emergency services.
In order for Travis to begin to receive services he needed to complete a Supports Intensity Scale (SIS). The SIS is an assessment used to determine the support an individual needs to be successful. This assessment is completed in an interview meeting. Foothills Gateway has trained assessors that facilitate the interview. This meeting takes two to three hours. At least two people that know the individual well answer questions about their support needs.
The questions cover areas such as; medical care, daily living skills, behavioral challenges, ongoing learning abilities, employment, etc… Everyone that enrolls in the state waiver program must have a SIS prior to enrollment.
The SIS assessment was developed in 2004 by the American Association on Intellectual and Developmental Disabilities. It was tested across the country to ensure its validity and reliability. The Centers for Medicare and Medicaid services requires that a consistent method is used for everyone across the state to assess the need for services provided by the state waiver.
The Colorado Department of Human Services and the Department of Health Care Policy and Financing decided to implement a rate-setting methodology that would reimburse for services according to a person’s needs as identified using the SIS. Individuals are assigned a Support Level based on their intensity of support needs identified by the assessment.
Per Foothills Gateway, “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 person. In addition, the Support Level also determines the Service Plan Authorization Limit (SPAL) in the HCBS-SLS waiver. The SPAL sets the upper payment limit of total funds available to purchase services to meet the person’s needs.”
It is important to present honest and accurate information so that a clear picture of the person’s support needs is fully captured by the SIS assessment. Otherwise an individual may end up at the wrong Support Level and not have the proper amount of funds to serve their needs.
During the SIS interview the respondent is asked questions about the level of support completing a task in the covered areas I mentioned. The first answer is type of support needed and rated as follows:
0 - no support needed at any time.
1 - monitoring (reminders)
2 - verbal/gesture prompting (coaching)
3 - partial physical assistance (help through doing)
4 - full physical assistance (doing for)
Then for each task the respondent has to rate the frequency as follows:
0 - none or less than monthly
1 - at least once a month, but not once a week
2 - at least once a week, but not once a day (up to 6 days a week)
3 - at least once a day, but not once an hour (at least 7 days a week)
4 - hourly or more frequently (24 hours a day)
And then rate the daily support time as follows:
0 - none
1 - less than 30 minutes
2 - 30 minutes to less than 2 hours
3 - 2 hours to less than 4 hours
4 - 4 hours or more
Imagine doing this for several pages of given tasks. Thank goodness there is a computer to figure out the algorithm for the Support Level. And for each task the respondents had to agree on each answer.
There are six levels of Support, 1-6, with 1 needing the least amount of support and 6 needing the most amount of support. Travis’s level of needs put him in Support Level 3.
The next step is having a Team Travis (which includes Travis) meeting to develop his Long Term Care Service Plan. It’s basically shopping within a given budget determined by his Support Level for supports and services for him within the community. To be continued….
As far as wait lists go? Another one bites the dust! Which leaves us with one more to go. The Department of Vocational Rehabilitation (DVR).
Can you see why I decided it might be best to retire? Being an advocate is a full-time commitment!
“A Special Needs Parent Fell in a Hole”
Family Member: What hole?
Boss: Oh that’s a shame. You can take the day off.
Doctor: Can you keep a diary of your experiences in the hole?
DBHDD (Department of Behavioral Health & Developmental Disabilities: We will assess the size of the hole. However it may take up to 18 months.
Local Authority: Sorry we don’t have enough money for a ladder.
Charity: Here’s a form. Fill it in to apply to get on the waiting list for a ladder.
Another special needs parent: I’m here! I’m coming down there with you. I’ve been here before. I know how to get out and I won’t let you do it alone.
Author Unknown