Research Fact Sheets: General Info
Non-Institutionalized Persons with Mental Retardation and/or Dev. Disabilities; Characteristics and Sevices Used, 9/2001
It is estimated that there are 3.8 million persons in the USA with mental retardation and/or developmental disabilities (e.g. cerebral palsy) living in non-institutionalized settings; this is 1.49% of the U.S. population. There has been very little information available about their characteristics and needs and the services provided to them. Those who are living in the community are the largest but least studied group of persons with MR/DD. The MR/DD Data Brief has provided a summary of new information about this population, based on data gathered in 1994 and 19951.
In 1994 and 1995, the Public Health Service National Health Survey included a disability supplement that collected information about individuals sampled as part of its annual household interview surveys. It focused on the civilian, non-institutionalized population of the U.S. The following is a summary of some of the findings of the survey reported by the MR/DD Data Brief:
Family Characteristics of the MR/DD Population
- 84.7% live with relatives, usually one or both parents (as compared to 41.0% of people in the general population).
- 6.7% live with a spouse (as compared with 46.6% in the general population).
- 73.3% have never been married.
- 14.0% of adults are currently married (as compared to 60% in the general population).
- The divorced, separated, widow rate was 12.6% (very similar to the general population -- 15. 5%).
- of persons younger that 25 years of age and who have never married, 31.2% live only with their mothers (compared to 19.8% for people without MR/DD).
- an estimated 219,357 have a child who live with them (14.4%).
Health Status
- 42% reported their health was very good or excellent (as compared to 67% without MR/DD).
- 24.5% reported their health was fair or poor (as compared to 9.8% without MR/DD).
- 45.6% used Medicaid services (as compared to 8.8% without MR/DD).
- 11.9% of adults used an outpatient mental health service; 4.3% of adults used impatient mental health services; 2% of adults used services for alcohol or drug abuse.
Functional Limitations (In Persons ages 5 or older)
- 88% of adults are not economic self-sufficiency.
- 73% had a learning limitation.
- 61% had restricted self-direction.
- 46% of adults had a substantial functional limitation in independent living.
- 38% had a substantial functional limitation in language.
- 10% had limitations in mobility or their personal care.
- Children between 6-17 years of age as compared to adults, were more likely to have a learning limitation, decreased self-direction or a language limitation.
- Young adults between 18-39 years of age as compared to older adults, were less likely to have a limitation in self direction (48%); but more likely to have limitations in independent living or in language. This may be influenced by the higher proportion of persons 40+ years with limitations in independent living who are in congregate care facilities and thus not included in the survey.
Specific Areas of Needed Assistance
- of adults, 66% received some kind of assistance with activities of daily living.
- a minority (25%) required ongoing supervision and 29% could not be left alone for more than 2 hours at a time.
- 14% of adults had difficulty leaving the house.
Participation In Major Life Activities
- 26% of adults were employed (as compared to 66% of adults without MR/DD).
- 70% of adults were not working or not looking for work.
- 11.7% of adults 18 years or older were going to school (as compared to 6.4% of adults without MR/CP).
- among adults, 12.1% received services from a day activity center, 9.2% worked in a sheltered workshop, 3.6% received supported employment assistance, and 3.5% received employment training. The use of these services among adults without MR/DD was less than 0.3%.
Health Related School Limitations for Children (ages 5-17)
- 63.5% received special classes or attended a special school because of an impairment or a health problem (as compared to 1.5% of children without MR/DD).
- 8.8% had either limited school attendance or could not attend school due to a health limitation or impairment (as compared to 1.5% of children without MR/DD).
- 6.9% who needed special classes or a special school were not receiving these services.
- 18.6% have no limitations associated with attending school (as compared to 94.7% of children without MR/DD).
The report contains a great deal of other information that is useful to the interested reader.
To quote the report's conclusions: "Additional attention to this group of people (estimated to be 900,000) and their parents or family members seem particularly warranted. So too, is attention to the estimated 219,000 parents with MR/DD who struggle to raise families in an increasingly complex world".
Inquiries about the report or copies can be obtained upon request from:
Publications Office
Institute on Community Integration
University of Minnesota
109 Pattee Hall
150 Pillsbury Drive SE
Minnesota, MN 55455
Tel: 612-624-4512
Fax: 612-624-9344
Web: http://rtc.umn.edu/nhis/pubs.html
1MR/DD Data Brief. Research and Training Center on Community Living; Institute on Community Integration, College of Education, University of Minnesota. April 2001; Volume 3 #1
, September 2001
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