FAST FACTS
A facility is considered an “institution” by the federal government if it has 4 or more beds.
About 12% of children, ages 5-17 (6.1 million)(1), have
difficulty performing one or more everyday activities related to learning,
communication, mobility and self-care. About 0.9% of these children (459,000)(1)
have difficulty with self-care and are likely to need long term care
assistance. Boys are almost twice as likely to have difficulty performing
everyday activities than girls are.(1)
2001 Facts:
| Number of individuals residing in nursing homes: | 1.45 million (2) |
| Patients with MR in Nursing Homes: | 41,338 (2.84%) (2) |
| Number of Residents in MRDD facilities: | 105,380 (2) |
| ICFs/MRDD Facilities: 6,486 | 6,486 (2) |
| ICFs/MRDD Total Beds: | 124,748 (2) |
Age Distribution for Persons with MR and/or DD Population (3)
- Under age 17 59%
- Age 17-64 38%
- Age 65+ 03%
2001 Selected Client Characteristics for ICFs/MRDD (2)
Client characteristics are not mutually exclusive.
| Characteristics | Number | Percent |
| Age: |
||
|
9,013 | 8.6% |
|
54,461 | 51.7% |
|
35,018 | 33.2% |
|
6,888 | 6.5% |
| Mild MR | 13,858 | 13.2% |
| Moderate MR | 16,883 | 16.0% |
| Severe MR | 23,251 | 22.1% |
| Profound MR | 49,439 | 46.9% |
| Autism | 7,603 | 7.2% |
| Cerebral Palsy | 21,606 | 21.6% |
| Epilepsy Controlled | 33,258 | 31.6% |
| Epilepsy Uncontrolled | 8,344 | 7.9% |
| Speech/Language Impairment | 59,339 | 56.3% |
| Hearing Impaired | 13,406 | 12.7% |
| Visual Impaired | 32,612 | 30.9% |
| Drugs to control Behavior | 41,269 | 39.2% |
| Physical Restraints | 8,852 | 8.4% |
| Off-campus Day Program | 51,749 | 49.1% |
Distribution of Persons with MR and/or DD in Residence Size (4)
There has been a dramatic decline in the number of children with MR/DD who receive care in large institutions (16 or more beds) and a shift toward care in smaller residences.
| 1-6 Residents | 7-15 Residents | 16+ Residents | |
| 1987 | 27.4% | 19.0% | 53.6% |
| 1998 | 58.8% | 15.7% | 25.6% |
| Total Residents: 1987--255,637; 1998--344,162. | |||
The Medicaid program is the most important program for people with mental retardation and/or developmental disabilities.
Medicaid Funding for Home and Community-Based (HCB) Services (5)
Historically, Medicaid long term care expenditures have financed services
delivered in nursing homes, ICFs/MR and other institutions, but the proportion
of spending directed to home and
community-based care has increased steadily over the past decade. Medicaid
spending on home and community-based services was about $18 billion (27%)
of the $68 billion spent on long term care in fiscal year 2000. The primary
means by which states provide home and community-
based services is through an optional approach called home and community
based services waivers. States must apply to the federal government for
these waivers.
HCB Waivers/Medicaid Spending by Group (6)
- MR and/or DD 76.7%
- Aged and Disabled 21.3%
- Other 2.0%
Trends in Medicaid LTC Spending for Institutional and HCB Care, 1990-2001 (7)
| Total Spending FY 1990 |
Total Spending FY 2001 |
|
| HCB Care | $ 3.9 Billion | $22.7 Billion |
| Institutional Care (NFs & ICFs/MR) |
$25.6 Billion | $54.0 Billion |
| Totals: | $29.5B | $76.7B |
2001 Medicaid Spending for HCB Services (7)
- Home Health $ 2.6B
- Personal Care $ 5.3B
- HCB Waivers $14.9B
2001 Medicaid Spending for Institutional Care (7)
- Nursing Facilities $43.4B
- ICFs/MRDD private $ 6.5B
- ICFs/MRDD public $ 4.1B
The proportion of Medicaid long term care spending devoted to HCB services
varies widely among states. For example, in 2001, 11 states devoted 40%
or more of Medicaid long term care
expenditures to community-based care; 30 states devoted 20% to 39% and
9 states and the District of Columbia devoted less than 20%. (7)
| How you
speak matters << |
1. America’s Children: Key National Indicator of Well-Being,
Federal Interagency Forum on Child and Family Statistics, 1999 as reported
in “Long-Term Care Chart Book: Persons Served, Payors and Spending,”
The Urban Institute, May 5, 2000.
2. OSCAR-MRDD 10/2002 (HSRE/KJD)
3. S.A. Larson and L. Anderson, Excerpts from an Analysis of the 1994 and 1995 NHIS-DS, Research and Training Center on Community Living, University of Minnesota, 2000 as reported in “Long-Term Care Chart Book: Persons Served, Payors and Spending,” P. 30, The Urban Institute, May 5, 2000.
4. R.Prouty et al., Residential Services for Persons with Developmental Disabilities: Status and Trends through 1998, Institute on Community Integration, University of Minnesota, May 1999 as reported in “Long-Term Care Chart Book: Persons Served, Payors and Spending,” The Urban Institute, May 5, 2000.
5. HHS, HCFA, Office of the Actuary, National Health Statistics Group, Personal Health Care Expenditures, 2001, as reported in “Long Term Care: Implications of Supreme Court’s Olmstead Decision Are Still Unfolding,” Testimony Submitted to the Senate Special Committee on Aging, September 24, 2001.
6. Harrington et al. 1915 © Medicaid Home and Community Based Waiver Participants, Services and Expenditures, 1992-1997 as reported in “Long-Term Care Chart Book: Persons Served, Payors and Spending, The Urban Institute, May 5, 2000.
7. MEDSTAT Group, from HCFA Form 64 Data
8. CMS Form 64 (HSRE/KJD)
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