The September 20th Joint Budget Committee (JBC) hearing left many who attended confused. Clearly, the JBC is concerned about the Autism Crisis- they openly asked the representatives from the Department of Healthcare Policy & Financing (HCPF) why they haven’t presented an action to protect Autism Services. On the other side, HCPF seemed nervous, but they didn’t present any action. They said that HCPF have no intention of taking emergency action- they will wait for the regular budget cycle in November, and ask for an increase late next year. Why, many asked, was HCPF not more concerned about the hundreds of emails they have received? Are they unconvinced that there is a crisis? The answer may actually be yes.

HCPF has internal numbers that they believe contradict the existence of an Autism Provider Crisis. They believe the numbers they presented to the JBC show there is no crisis in Colorado Autism services. We will look at the numbers in moment, but first let’s look at the numbers that make many believe we are facing a crisis.

Side 1: There is a Crisis in Colorado Autism Services

Hundreds of families and providers, several news outlets and the Joint Budget Committee are all convinced there is a crisis in Autism Services in Colorado. They believe that providers are leaving the state at an alarming rate due to unsustainable Medicaid rates. Here are the facts:

  1. In the last year alone, over 10 companies that provide ABA services to children with Autism have either left Colorado or shutdown. They have closed over 20 centers and left more than 1,000 families without necessary services (see image above).
  2. This has created waitlists for families seeking services that are, on average, nearly 8 months long. As families and providers know, this is a devastatingly long wait time for a child who needs services before they start school.
  3. This crisis has been reported extensively in the news, including on Behavioral Health Business, CBS, 9News, Denver7, NBC, again on CBS, the Colorado Sun, and again on CBS
  4. The cause of the crisis is low Medicaid rates, which make it difficult to sustain business in Colorado. As the CEO of one of one of Hopebridge, one of Colorado's largest Autism providers, said in June when they pulled out of Colorado, "Colorado Medicaid has left us no other choice than to withdraw from ABA services." They closed 8 centers.
  5. Hundreds of families and providers have emailed and phoned the Joint Budget Committee, HCPF, and the Governor's Office expressing concerns about the crisis.
  6. The Joint Budget Committee has expressed concern and openly asking HCPF to take action to resolve the crisis in last month’s hearing. Senator Barbara Kirkmeyer went on the news to publicly ask the governor’s office and HCPF to take action.

Despite the above, HCPF and the Governor’s Office have not yet acted to address the crisis. As it now appears, the reason is at least in part because HCPF thinks their numbers show the crisis isn’t as dire as it seems.

Side 2: HCPF’s Numbers

So what are the numbers that make HCPF disagree that there is a growing shortage of Autism providers in Colorado? The slide they presented to the JBC is below:

Figure 2: HCPF slide presented at 9/20/23 JBC Hearing

In their presentation, HCPF presented the above slide, and said:

Significant increases in PBT: # of children served doubled; amt spent increased fourfold; dollars per child up +75%.”

PBT Providers Increased: # of rendering providers has grown dramatically over the years. This year, we’ve seen reduction of ~30 rendering providers (individuals) as of June 2023, and 9 billing providers (organizations).

The first point is undeniable: utilization of PBT services (or the amount of money spent on the services, and number of children served) has gone up dramatically every year since 2017. HCPF would likely agree that this is due to Medicaid population growth, higher diagnoses rates of Autism, and better education about treatment options leading to more children receiving the services they need. This growth is a good thing, and HCPF should be proud of its expansion of the program. Colorado has developed a robust Autism Services industry for children.

While showing that the need for services has increased, however, utilization does not show unmet needs. It shows services provided- not denied. It doesn’t show how many families are on waitlists, or that simply never receive services. It is the shadow of crisis, not its measure.

The measure of the Colorado Autism Services Crisis is the difference between the number of Colorado children that need Autism services and the state’s providers capacity to provide those services.

Provider Count:

The provider count is the core issue behind the Services Crisis in Colorado. In the JBC Hearing, HCPF says that the “# of rendering providers has grown dramatically over the years.” This is true: there is a general upward trend of providers during the period on their graph. The graph they presented only shows July, 2021 through June, 2023. To put it in context, we need to look at HCPF’s Rendering Provider counts from 2018 through June, 2023. Below is the graph:

 Figure 3: Graph of rendering providers provided by HCPF from 2018-2023. Grey portion represents what HCPF presented in JBC meeting.

The above graph looks very different than the one presented by HCPF to the JBC. First: this graph shows the growth of the Providers since 2018, while their graph only showed the portion in the grey box. As can be seen, the growth in providers has significantly slowed, and actually begun to decline. Second: the numbers don’t match those presented to the JBC. It is unclear why this is. Many of the rendering providers in the list that HCPF provided are old names of current companies that changed their name- still listed as active rendering providers along with the same company under its new name. There are also many duplicates of the same company listed as providers. We do not know what changes they made to their data to prepare it for the JBC presentation, but those changes reduced the number significantly. Perhaps they removed some of duplicate providers and erroneously listed old company names. Finally, the internal data provided by HCPF shows a sharp decline in the number of rendering providers not seen in their JBC presentation. Starting around 7/1/2022, the number declines from 282 to 253. It is also unclear why there is this difference in the two charts. We are not speculating as to why the number is different, somehow the providers were counted differently.

HCPF didn’t show the many providers that left Colorado after June 2023 on their graph, probably because it was outside of the fiscal year. They do say that “we’ve seen a reduction of ~30 rendering providers (individuals) as of June 2023, and 9 billing providers (organizations).” Much of the developing crisis is only mentioned in this footnote.

The count of PBT Billing Providers (organizations that provide services) is more informative, as it has fewer duplicate entries and organization old names listed as current providers. The chart of Billing Providers from 2018-2023 is presented below:

Figure 3: Graph of PBT Billing Providers each fiscal year from 2018-2023. Included at the end is the number of providers since June, 2023- after 9 billing providers left (as mentioned by HCPF above).

Again, we see the same trend as the above chart, especially to important features: the number of providers between 2018 and 2021 climbed dramatically in both charts, and then slowed and began to decline in 2022. This is more pronounced in the rendering providers, because even large companies that left only count as one on the billing provider chart. Though it might tend to minimize the crisis, we used their Billing Provider data for the following because it seems more accurate.

Using HCPF’s publicly presented data, and the more reliable count of Billing Providers from their provided data, we can combine it into a complete picture of the measure of Crisis:

Figure 4: Chart combining HCPF JBC data on children using PBT program (blue bars), and HCPF billing providers counts converted into provider capacity (green and red lines). Trend lines for both also included.

This chart is made entirely from HCPF’s own internal and publicly presented data. A few things happened to make this chart:

  1. To better contextualize the data, we converted the number of billing providers into provider capacity. This was done by finding the average number of participants per provider in previous years, which turned out to be very reliable: 29.8 ± 1.1 participants per provider. The provider count was then multiplied by this number for each year to determine the number of children that Colorado providers could serve.
  2. The blue trend line shows the expected continued growth of children needing services. Nationally, this upwards trend has proven to be accurate.
  3. The red line shows the trend in the decline of Billing Providers from 2022 through today, including the 9 companies that left since June 2023 mentioned by HCPF above. We do expect this trend to continue. Several providers that we know of are currently in the process of deciding whether to leave Colorado, including one of the state’s largest providers.
  4. The gap between the two trend lines represents the number of families that cannot be served: either on waitlists or simply unable to find a provider. From the chart, we estimate the number of children currently on waitlists is at least 1,200- or 18% of families needing services. In FY2023-24 this percentage will rise to 32%. In FY2024-25, 44% of families that need services will be unable to find them.

Conclusion:

The above charts should raise alarm bells for anyone viewing them. Far from having data that contradicts the existence of an Autism Services Crisis in Colorado, HCPF’s own data lines up nearly perfectly with the other evidence we have of a deepening crisis in Colorado Autism services. The discrepancy between provider capacity and children needing services lines up with the dramatically increasing waitlists that families are facing. As a result, hundreds of families are writing HCPF and the Governor’s Office begging for them to recognize the crisis and act immediately to resolve it.

The story painted by all the data is exactly the same: Pediatric Behavioral Therapy in Colorado has grown massively since 2018, meeting the growing need of children. Providers in Colorado have grown to meet the need, developing a robust and skilled provider community. Medicaid rates did not keep up with the cost of doing business, and today the Autism service community is crumbling under unsustainable financial pressure. Companies are fleeing Colorado, or going out of business. As a result, thousands of families are finding themselves unable to find these medically mandated services, with waitlists quickly growing to one year or more. They are begging HCPF and the Governor’s Office for help, but are not receiving it.

We sincerely hope that HCPF will take a fresh look at their numbers and recognize that, far from contradicting the existence of a crisis- they confirm it. Thousands of families are unable to receive Autism services because of the growing lack of providers. We are only seeing the beginning of the crisis, and the number of families unable to receive services could double each year as the need for services continues to grow, and the providers able to sustain business in Colorado shrinks. Thousands of families without services is heartbreaking for the impact it has on their lives today. It is also heartbreaking for the bigger implications: thousands of children without services today will be more reliant upon the system as they grow older. Colorado already is critically underfunded for adult disability services, and decisions made today could either relieve pressure on those systems tomorrow- or make them exponentially worse.

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