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NCI Data and Emergency Planning
Oct 29th, 2013 by | No Comments YetWe recently read this article in DisabilityScoop regarding emergency plans for individuals with disabilities. The article states that “Just 20 percent of the world’s people with disabilities could evacuate immediately without difficulty in the event of a disaster…some 6 percent said they would not be able to escape at all while the remainder indicated they could evacuate with varying degrees of difficulty.” These statistics prompted us to look at what NCI data show about emergency planning.
NCI family surveys, which include the Adult Family Survey (AFS), the Child Family Survey (CFS) and the Family/Guardian Survey (FGS), are mail-out surveys filled out by family members of individuals with intellectual or developmental disabilities (ID/DD). Respondents to the AFS have an adult (18+) individual with ID/DD living in the family home. Respondents to the CFS have a child with ID/DD (<=age 22) living in the family home. The FGS is given to respondents with an adult (18+) with ID/DD that lives outside the family home. All three of these surveys include a question worded as follows: “Did you discuss how to handle emergencies related to your family member at the last service planning meeting?” Although this question does not assess whether the individual with ID/DD has an emergency plan, we decided to take a look at these data to see what they show about discussion of emergency planning for the family members with ID/DD of the respondents to the family surveys. We examined data from the 2011-12 survey cycle. The percentages shown are the percentages of the total sample; those who responded “don’t know,” “not applicable” and those who left the relevant questions blank are included in the denominator.
As can be seen in the table below, for each survey between 50%-60% had discussed the handling of emergencies at the last planning meeting.
Discussed handling of emergencies at last planning meeting
AFS (N=5,567)
55.7%
CFS (N=1,188)
54.4%
FGS (N=3,530)
59.5%
Respondents to the AFS and CFS all have a family member with ID/DD living in the family home. However, respondents to the FGS all have an adult family member living outside the family home. We thought it would be interesting to look at the rates at which FGS respondents reported discussing emergency planning by the place of residence of the individual with ID/DD.
The findings are presented in the table below.
Discussed how to handle emergencies at last planning meeting
Where family member lives
Specialized ID facility (N=562)
Group home (N=1571)
Agency-owned apartment (N=191)
Independent home/apt (N=574)
Adult foster care/host family home (N=274)
Nursing home (N=19)
Other (N=131)
Yes
62%
62%
55%
62%
64%
58%
60%
As can be seen, the rates at which respondents reported having discussed the handling of emergencies at the last planning meeting for their family member with ID/DD range from 55% (of individuals with ID/DD who live in agency-owned apartments) to 64% (for individuals with ID/DD who live in adult foster care/host family homes).
As previously stated, these data do not indicate whether emergency planning has actually taken place, it merely shows whether emergency planning was discussed at the last planning meeting. These data do not indicate whether the individual with ID/DD him/herself is aware of the emergency plans. However, states may use these data to inform emergency planning procedures and protocols.
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Place of residence of individuals with ASD.
Sep 10th, 2013 by | No Comments YetThis article from Disability Scoop detailed a study that found that young adults with autism are more likely than those with other disabilities to live with their parents and less likely to live independently. According to the study, only about 17% of young adults (age 21-25) on the autism spectrum have ever lived independently. By comparison, nearly 34% of their peers with intellectual disability have lived independently. This prompted us to look at what NCI data show about the living situations of those with and without autism of all ages.
For the purposes of this blog, we looked at the 2011-2012 administration of the Adult Consumer Survey. The Adult Consumer Survey is a face-to-face interview with adults with ID/DD receiving state-funded services. The total sample was comprised of adults from 19 states and 1 sub-state entity. Information regarding health care and residence is collected in the background information section of the Adult Consumer Survey. While the study cited above reports on whether an individual has ever lived independently, NCI asks about where the respondent lives currently. In addition, the Adult Consumer Survey samples individuals aged 18 and above, while the study cited surveyed individuals aged 21-25.
Of the total sample (n=11,529) 12% of respondents were diagnosed with an autism spectrum disorder (ASD). Of those with an ASD, 41% lived in a parent or relative’s home. The following table demonstrates where respondents with ASD lived:
Residence type
Institution
Community-Based Residence
Independent Home/Apt
Parent/Relative’s Home
Foster Care/Host Home
Other
Individuals without ASD
9%
38%
13%
33%
6%
5%
Individuals with ASD
4%
37%
9%
41%
5%
4%
NCI data show that respondents with ASD are living with parents/relatives at a higher rate than individuals without ASD (41% vs. 33%), and are living in independent homes at a lower rate than individuals without ASD (9% vs. 13%). NCI respondents with ASD are less likely to be living in institutional settings than those without ASD (4% vs. 9%).
Examining the living situations of individuals with ID/DD can be useful for policy and program design. For example, previous studies have found that the receipt of preventive health care by individuals with ID/DD varies significantly by place of residence. These findings can lead to programs that encourage health care utilization and target those who live in differing settings. NCI states have also used data by place of residence to look at psychotropic drug use, employment and loneliness. How has your state used data by place of residence?
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Preventive Care
Jul 17th, 2013 by | No Comments YetA recent study published in Health Affairs examined state Medicaid programs and found that many states may not cover all of the preventive care services recommended by the US Preventive Services Task Force. Under the Affordable Care Act (ACA), Medicaid offered to individuals who are newly eligible as a result of the expansion, plans offered through Medicare and plans offered through private insurance are required to cover certain preventive care services such as screenings and counseling. However, state Medicaid plans are not required to cover these preventive care services for adults who received Medicaid before the expansion (also known as “existing beneficiaries”). The Kaiser Family Foundation states that beneficiaries with disabilities made up 15% of total Medicaid enrollees in FY 2010. Because many enrollees with disabilities are characterized as existing beneficiaries, they may be exempt from the requirement for preventive care coverage.
This study prompted us to look at NCI data and what they show about preventive care received specifically by the population of adults with intellectual and developmental disabilities (ID/DD). We looked at results of the Adult Consumer Survey of 2011-12. The Adult Consumer Survey is a face-to-face interview with adults with ID/DD receiving state-funded services. The total sample was comprised of 10,147 adults from 29 states and 23 sub-state entities. Information regarding health care is collected in the background information section of the Adult Consumer Survey.
The vast majority of individuals included in the Adult Consumer Survey sample receive Medicaid benefits.
In the Adult Consumer Survey, we ask about receipt of the following preventive health care:- Whether the individual has a primary care doctor
- Whether the individual had a complete, annual, routine physical exam within the past year
- Whether the individual had a dentist visit within the past year
- Whether the individual had an eye exam/vision screening within the past year
- Whether the individual had a hearing test within the past five years
- Whether the individual received a flu vaccination within the past year
- Whether the individual has ever received a pneumonia vaccination.
- If the individual is female, whether she had a Pap test within the past 3 years
- If the individual is female and age 40 or above, whether she had a mammogram in the past two years
- If the individual is age 50 or above, whether he/she had a colorectal cancer screening in the past year.
The following tables demonstrate the results. These results exclude people with “Don’t Know” responses from the denominator:
Does Individual Have a Primary Care Doctor?
Doesn’t have a primary care doctor
6.8%
Has a primary care doctor
93.2%
Has Individual had a Routine Physical Exam in the Past Year?
No, not in the past year
9.0%
Yes, in the past year
91.0%
Has Individual had a Dentist Visit in the Past Year?
No, not in the past year
17.9%
Yes, in the past year
82.1%
Has Individual had an Eye Exam/Vision Screening in the Past Year?
No, not in the past year
38.9%
Yes, in the past year
61.1%
Has Individual had a Hearing Test in the Past 5 Years?
No, not in the past 5 years
30.5%
Yes, in the past 5 years
69.5%
Has Individual had a Flu Vaccination in the Past Year?
No, not in the past year
21.9%
Yes, in the past year
78.1%
Has Individual Ever had a Pneumonia Vaccine?
No, never
58.1%
Yes
41.9%
If the Individual is Female, Has she had a Pap Test Within the Past 3 Years?
No, not within the past 3 years
26.4%
Yes, in the past 3 years
73.6%
If the Individual is Female and Age 40 or over, Has she had a Mammogram in the Past 2 Years?
No, not within the past 2 years
17.5%
Yes, in the past 2 years
82.5%
If the Individual is age 50 or Above, has he/she had a Colorectal Cancer Screening in the Past Year.
No, not within the past year
82.9%
Yes, in the past year
17.1%
As is evident from the above tables, not all Adult Consumer Survey respondents are receiving preventive care screenings within the recommended time periods. When looking at these data, it is important to remember that preventive care utilization rates for people with ID/DD can be influenced by many factors, including race/ethnicity, place of residence, age, etc. Previous blog posts and publications that used NCI data[1] have documented the influence of some of these factors.The study in Health Affairs found that states will vary in whether they will cover specific preventive care services to existing Medicaid beneficiaries. Individuals with ID/DD already face many barriers to adequate health care such as lack lack of disability competency and awareness among health care providers, communication barriers, and transportation difficulties. We hope that the possible limitations in Medicaid coverage will not serve as additional barriers to adequate preventive healthcare for individuals with ID/DD.
[1] Bershadsky, J., Taub, S., Bradley, V., Engler, J., Moseley, C., Lakin, K. C., Stancliffe, R. J., Larson, S., Ticha , R. & Bailey, C. (2012). Place of residence and preventive health care for developmental disabilities services recipients in twenty states. Public Health Reports, 127, 475-485.