Shared from M&L Special Needs Planning, LLC

United Cerebral Palsy (UCP) is an international organization that provides services and advocacy for adults and children with disabilities. UCP recently released its annual report ranking state performance on services: The Case for Inclusion 2019.

The report acts as a “snapshot” of individual state performance in terms of Medicaid programs and services offered to Americans with disabilities. It also ranks individual states based on their performance in comparison to other states. States that have performed particularly well are identified in the hopes that their policies and other practices will be replicated.

This year, for the first time, UCP partnered with the American Network of Community Options and Resources (ANCHOR) Foundation to “publish a comprehensive set of data for our nation, plus all 50 states and the District of Columbia, to protect the gain’s made and identify areas in which more progress is needed”.

2019 Results

The Case of Inclusion report was created by compiling data collected in 2016, as compared to the first year the report was published (2006). The report and the information contained within is intended to shape federal policy, serve as a tool for providers, act as a resource for media and advocates when discussed and analyzing disability and disability related issues. It is also intended to inform conversations and debate around these issues, on personal, political and governmental levels. Overall, the report identifies that there have been many positive gains in the 10+ years that the report has existed.

As written, “Today in America, a person born with intellectual and developmental disabilities (I/DD) has a great opportunity for a long, healthy, full and meaningful life.” It does point out, however, that there is still work to be done.

Positive Trends

  • Recipients of Home and Community-Based Services has increased by 86%
  • Spending for HCBS has doubled from $17.2 billion to $35.4 billion.
  • Institutional spending has dropped from $12.1 billion to $10.5 billion. Medicaid Buy-In programs have expanded from 33 to 48 states.
  • Family support services have increased by 32 percent
  • Participation in National Core Indicators has doubled, from 24 states to 47 states for the quality assurance program.
  • Large, isolating state institutions have decreased in number from 176 to 140, and the number of individuals living in these institutions has been cut in half, from 39,000 to 19,000 people.
  • The number of individuals served in their own homes has increased by 45 percent
  • The number of individuals served in their families’ homes has increased by 33 percent
  • The number of individuals served in shared living/host homes has increased by 82 percent

Negative Trends

  • Competitive employment participation has dropped from 24 percent to 19 percent of individuals served.
  • Waiting lists have tripled from 138,000 to 424,000

The Best and Worst Performing States

The top ten ranking states report a wide range of populations (from small to large), a complete range of income levels (very low to very high) and a wide range of tax burdens. Interestingly enough, these ten states perform the best, but do not spend the most, suggestion that the way resources are allocated is equally (or more) important than how much money is spend.

Top Ten    

Ranking   State
1 Arizona
2 Oregon
3 Vermont
4 Missouri
5 Kentucky
6 Hawaii
7 New Hampshire
8 Ohio
9 California
10 South Dakota

Bottom 10

Ranking   State
51 Mississippi
50 Arkansas
49 Texas
48 Montana
47 Oklahoma
46 North Dakota
45 Iowa
44 Illinois
43 New Mexico
42 West Virginia

There are also a number of states that experienced significant improvements – and drops. The most improved state identified in the report was Washington, D.C., who increased by 38 places. This improvement is attributed to the “increase in the share of individuals using home and community-based services – 88% of individuals served are now served in home-like settings. Alaska was identified as having the biggest drop, losing 38 places.

Other Take-Aways

In addition to data about state performance, another important take-away was identified: the ongoing issue with Direct Support Professional (DSP) workforce. DSPs are professionals that work directly with individuals with I/DD, so that these individuals can live and work in the communities of their choice, instead of in institutions.

While demand is steadily rising, the number of people employed in this field is decreasing. Experts point to issues such as low wages, high responsibilities, and burnout as primary factors in the high turnover rates. The report identifies this as an area of concern, as individuals with I/DD are often negatively affected by the lack of stability that comes from high turnover rates.

Would you like More Information?

Thank you for taking the time to visit our blog. We hope that we were able to provide you with some interesting information and useful resources that you can use in your search for home and community-based services and advocacy efforts.

We urge you to take a few moments to visit the Case for Inclusion 2019 website, and examine The Case for Inclusion 2019 report in greater detail. If you have any questions about this report, or how to plan for the future of your family with special needs please contact us. We would love to hear from you!

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