One page infographics:
How many people with IDD lived in the U.S. and how many received IDD services? (Prevalance PDF, 443 KB )
4.7 million people in the United States had Intellectual or Developmental Disabilities (IDD) in 2014. 30% (1,374,398 people with IDD) were known to or served by state IDD agencies.
Where do people served by state IDD agencies live?
(LTSS PDF, 263 KB )
Of the people receiving long-term supports and services, this infographic shows the percentages of where people live. It also shows the percentages of where people live who receive long-term supports and services who do not live with a family member (a relative).
How many people with IDD received Medicaid HCBS Waiver funded services in 2014? (Waiver PDF, 198 KB )
Home and Community Based Waiver funded services are intended to suport people with Intellectual and Developmental Disabilities to live in their communities.
How many people with IDD received Medicaid ICF/IID funded services in 2014? (ICF/IID PDF, 198 KB )
Intermediate Care Facilities for Individuals from Intellectual Disabilties had 77,765 people living in them as of June 30, 2014, with 94% 22 years or older and 6% 21 years and younger.
How many people lived in state-operated IDD facilities by size on June 30, 2014? (State-operated PDF, 300 KB )
State-operated facilities as of June 30, 2016 continue to be for sixteen or more people with IDD, but a map indicates the closure rate of these large state facilities by state since 1977.
How have the sizes of places in which people with Intellectual and Developmental Disabilities (IDD) live changed? (Non-family settings PDF, 187 KB )
Since 1977 to 2014 the proportions of where people with IDD live and receive long-term supports and services when outside the family home has shifted from large settings (84% in 1977 to 9% in 2014) to small settings (8% in 1977 to 80% in 2014).
September 9, 2016
New Home and Community-Based Services regulations change how home and community-based long-term services and supports will be provided. These regulations will improve the quality of HCBS. They will also provide additional protections to individuals that receive services. To learn more about these changes and what they mean for recipients of HCBS services visit HCBS Advocacy.
January 26, 2015 - ICF/IID costs nearly triple cost of HCBS
Nationally for children and adults combined, average annual per year end participant expenditures in FY 2012 were $44,160 for people receiving HCBS funded supports and $143,996 for people living in ICF/IID certified settings. In New York, the expenditures were $70,793 for HCBS recipients and $440,470 for ICF/IID residents.
Nationally, the average annual per year end participant costs were 3.26 times higher for people living in an ICF/IID than those receiving supports funded by an HCBS Waiver. In New York, the average annual per year end participant costs were 6.2 times higher for people living in an ICF/IID than those receiving supports funded by an HCBS Waiver.
There are several caveats to keep in mind as you interpret these numbers.
Services included (Recipient support needs)
The Intermediate Care Facility for Individuals with Intellectual Disabilities provides 24 hour/7 days a week residential support. Those costs include both residential expenditures and expenditures for employment or day habilitation services. By comparison the HCBS Waiver program provides only the services the specific person needs. It usually excludes room and board costs even when a person lives in a group setting with 24 hour/7 day per week services. Those costs are typically covered by another funding mechanism. If a person getting HCBS Waiver funded services does not need a particular service that is bundled into the ICF/IID rate, the HCBS Waiver does not include those expenditures.
An example of this on-site nursing services. The ICF/IID program dictates a minimum level of nursing support for people in ICF/IID whether they need it or not. Nationally, 9% of all staff of large public residential facilities are nurses (See Table 7.20). For people getting HCBS Waiver funded supports, in-home nursing and other medical supports are paid for only when specifically needed for a person. Most people getting HCBS Waiver funded services get their medical care from community based health care providers like the general public.
Some have argued that institutions (ICF/IID or nursing homes) are more expensive because they serve people whose needs are more expensive to support. Our report does not speak directly to this point. However, this assertion can be rebutted several ways.
For example, neither Oregon nor Michigan operate ICF/IID settings of any size. Their average annual per recipient HCBS waiver expenditures are $40,220 and $11,188 respectively compared to the national average of $44,160. If they were serving people with more expensive support needs in the HCBS Waiver program because they did not have any ICF/IID settings for those people we would expect their average annual expenditures to be higher than the national average rather than lower.
A related argument asserts that large public residential facilities (costing on average nationally $237,250 per person per year) serve people whose needs cannot be met in non-institutional settings. This assertion can be rebutted in that 13 states (Alabama, Alaska, Hawaii, Indiana, Maine, Michigan, Minnesota, New Hampshire, New Mexico, Oregon, Rhode Island, Vermont, and the District of Columbia) have been closed all of their large public residential facilities and now support the people who once lived in large public residential facilities in other state or nonstate settings (see Table 6.5). Thirteen states have demonstrated that it is possible to support the fully array people with IDD in settings other than large public IDD facilities.
Only 26,981 people with IDD remained in 139 large public facilities on June 30, 2012 and the number continues to shrink each year (See Table 6.5). On June 30, 2012, New York had 18 such facilities serving a total of 1,633 people with IDD (and an estimated 39 additional facilities that the RISP project does not track in our longitudinal study). The number of people with IDD living in large public residential IDD facilities in New York was 21,239 in 1977 and has steadily declined since then (see the NY state profile on page 206 of the FY 2012 report).
The proportion of ICF/IID residents who were adults is much larger than the proportion of HCBS Waiver recipients who are adults. On Table 1.7 you can see that in New York, 731 ICF/IID residents were ages birth to 21 years and 6,522 were ages 22 years or older (90% of ICF/IID residents were adults). By contrast of the HCBS Waiver recipients in NY, 20,887 were ages birth to 21 years and 51,125 were ages 22 years or older (71% of all HCBS Waiver recipients were adults).
Under IDEA, the public education system pays for a free appropriate public education for people with disabilities ages birth until they age out of school (22nd birthday in most states). Public education services provide supports to people with IDD typically 5 days a week, 6 hours per day, 9 months of the year or more (with some variation from state to state) support hours that do not have to be paid by the Medicaid program. For this reason average annual support costs are much lower for children than for adults. For example, in New York, 2012 average annual per person HCBS Waiver expenditures were $18,578 for recipients ages birth to 21 years compared with an average of $84,853 for recipients ages 22 years or older (4.6 times higher for adults than for children; See Table 1.8).
In New York, 92% of all ICF/IID recipients plus HCBS Waiver recipients are in the HCBS Waiver program while only 63% of all ICF/IID plus HCBS Waiver expenditures were for people in the HCBS Waiver program (See Table 4.3).
Average annual per person expenditures for HCBS Waiver recipients in NY were $18,578 for recipients ages birth to 21 years compared with $84,853 for recipients ages 22 years or older (See Table 1.8).
Type of place the person lives
HCBS Waiver funded services can be provided to a person living in the home of a family member or in a home they own or lease, while ICF/IID services by definition are provided in an institutional setting. In New York, as in the rest of the country 100% of ICF/IID recipients live in a congregate setting but in New York, only 37% of HCBS Waiver recipients live in a congregate (group home) setting.
In NY on June 30, 2012, there were a total of 77,429 HCBS Waiver recipients. Their living arrangements were as follows (See Table 3.1).
|Number of people||(% of all Waiver recipients)|
|State-operated group home||7,329||(9%)|
|Nonstate group home||21,762||(28%)|
|Host home or foster family home||2,204||(3%)|
|Home the person with IDD owns or leases||5,033||(7%)|
|Home of a family member||41,011||(53%)|
For fiscal year 2012 in New York, average annual per person HCBS Waiver costs for persons ages 22 years or older were $30,523 for people living in the home of a family member compared to $123,114 for people living in any other type of setting (See Table 1.8).
In New York in 2012, the average annual cost for a person with IDD of any age living in an ICF/IID setting was $444,470 per year end resident (we did not separate ICF/IID costs for children versus adults in 2012). The average annual cost for HCBS Waiver recipients ages 22 years or older living in a setting other than the home of a family members were $123,114.
In New York, in 2012, ICF-IID services cost 3.6 times more per person than HCBS Waiver services provided to adults living in a setting other than the home of a family member.
January 21, 2015 - 2014 online RISP survey opens for data collection
Today the 2014 online RISP survey was released. Look forward to reviewing the data from this report in the fall of 2015.