Waiting. The word has taken on a whole new dimension for people around the world in the last few weeks. People are waiting (often in vain) to get tested for the novel coronavirus 2019 (COVID-19), to get out of quarantine, to get groceries (and toilet paper), to get back to work, to be free of fear… Last week, a COVID-19 test site in Alabama had a 14-mile long line of cars waiting and ran out of test kits minutes after it opened! I’m not writing about COVID-19 today, but this new state of waiting came to mind when I read a new report on waiting lists for people with intellectual and developmental disabilities (I/DD).
From 2016 to 2017, the number of people with an I/DD on waiting lists for Medicaid-funded home- and community-based services (HCBS) increased by 49,000 people, to 473,000. That’s an 11.6% increase in individuals with I/DD on the waiting list in a year at a time when the total population of the country grew by 0.8%. The analysis by ANCOR Foundation and United Cerebral Palsy, published in The Case for Inclusion 2020, found that 10 states saw decreases in the number of people on their HCBS waiting lists, while 23 states saw their waiting lists grow. On one end of the spectrum, nine states (California, Delaware, Hawaii, Idaho, Massachusetts, Michigan, Missouri, New York, and Washington) and the District of Columbia had no waiting list for HCBS services. On the other end of the spectrum, five states (Illinois, Florida, Louisiana, Ohio, and Texas) had waiting lists with more than 15,000 individuals. Their analysis also noted that Texas alone makes up about half of the total number of individuals on the waiting list.
However, it is important to note that while waiting lists are longer, the number of consumers with an I/DD who receive HCBS services has increased by 15.6% from 807,462 in 2016 to 933,084 in 2019, according to the new OPEN MINDS market intelligence report The Evolving Market For Intellectual & Developmental Disability Services: A 2020 OPEN MINDS Market Intelligence Report. The percentage of the I/DD population on Medicaid receiving HCBS grew from 30.4% in 2016 to 39.5% in 2019.
Why are waiting lists getting longer? There are a few factors. People with an I/DD are living longer (see Adults With Intellectual And Developmental Disabilities: A Unique Population in Today’s Geriatric Medicine). There is also competition for limited Medicaid dollars from other populations with disabilities—and I/DD waiting lists often get only the “leftover funding” after all other needs are met, according to my colleague, OPEN MINDS Senior Associate George Braunstein.
And there are idiosyncrasies in waiver funding that contribute to waiting lists. Most often, funding is based on the number of waiver slots and not on the level of care required by individuals. This causes a number of financial management anomalies. People receiving HCBS might not draw down their full allocations, but the monies can’t be used to provide HCBS to those who have been waiting for years. Mr. Braunstein said the solution is better management—and needs-driven management—and this may drive the use of managed care programs for waiver services.
What are the implications for consumers on waiting lists? These consumers might receive some case management and vocational rehabilitation services under their Medicaid coverage, but not the full range of services needed to have meaningful daily activities, according to my colleague, OPEN MINDS Senior Associate Lori Schmidt. Without access to HCBS waivers, people with I/DD cannot live independently in the community with support services like home modifications, personal care, wellness monitoring, assistive services, financial management support, pre-vocational services, supported employment, and day programs.
So what are the opportunities for serving consumers with HCBS waivers? The more states fund waiver slots and adopt the principles of self-determination, we will see consumer-level competition among provider organizations. Where consumers with an I/DD seek services depends primarily on two factors—who their case manager recommends and who their peers and families like theirs recommend. “The I/DD community is a very tight-knit community, they talk to each other all the time,” observes Ms. Schmidt. As a provider organization, attracting this population is all about ‘word of mouth marketing,’ which means you want your customers to talk about you favorably and recommend you to their friends. They have their private “Yelp” ratings for provider organizations and the only way you can get a good score is by rendering the best customer service and being responsive to the needs of your consumers and families.
For most provider organizations, this means two critical changes. First, improve your customer experience for consumers, families, case managers, and referral sources (see Can You Be Disneyland? 3 Rules To ‘Up’ Your Customer Service Game and 5 Reasons Why ‘Consumerism’ Must Be Part Of Your Strategy). Second, use online marketing tools—website and social media—to let “the world” know about your great customer experience (see Finding The Path To Online Marketing Success: An OPEN MINDS Executive Seminar On Best Practices In Website & Social Media Marketing and Marketing Online—Digital Strategy At Bancroft). And one other note—while you’re upping your customer experience and online reputation game, keep an eye on the adoption of managed care for this population in the states you serve.
For an update on the I/DD market metrics that should factor into your next strategic planning session, check out our new report – The Evolving Market For Intellectual & Developmental Disability Services: A 2020 OPEN MINDS Market Intelligence Report. The report provides a quantitative overview of the I/DD support services market – the population and the total spending by market segment. We found that the prevalence of I/DD has remained the same in the U.S. population. But there are two important changes: There are an increasing number of consumers with I/DD enrolled in Medicaid long-term services and supports. And on the spending side, community-based services are increasing as a proportion of total spend.
While it often seems that progress in I/DD financing and service delivery is slow, there are important changes ahead. The key is to keep pace with the market and not wait to adjust other trends. Keep in mind the words of Abraham Lincoln: “Good things come to those who wait, but only what’s left from those who hustle!”
For more about the I/DD market, check out these resources in the OPEN MINDS Circle Library.
- The Changing Landscape For Autism & I/DD Services: An Executive Briefing
- For Success With The I/DD Population, Employment Matters
- The Future Of Medicaid Managed Care: Building A Comprehensive Care Solution For The Complex Consumer Population
- Managing Care For Complex Consumers: The Importance Of Community Inclusion
- Oklahoma Medicaid Adds Registered Behavior Technicians As New Professional Type For Autism Treatment
- Tennessee’s Long-Term Services & Supports (LTSS) Program: Employment & Community First (ECF) CHOICES
- Self-Determination & Community-Based Service Shaping The IDD Landscape In California
- Disrupting ASD Treatment: Opportunities & Challenges
- The Columbus Organization—A “Peace Of Mind” Solution To Customer Service
- Making Managed Care Work For Complex Consumers
And for a deep dive, join us on June 1 in New Orleans for the OPEN MINDS 2020 I/DD Executive Summit: Strategies For The Future featuring Michael J. Hammond, Vice President, Product Strategy & Partnership Development, Optum Health; Delcie David Bean IV, Chief Executive Officer, Paragus Strategic IT; and Stacy DiStefano, Chief Operating Officer, Chimes International, Ltd.