The following is an analysis from Steve Gold of Money Follows the Person and ICF-MRs that he sent in his email bulletin #115 in June of 2006. Back issues of other Information Bulletins are available online at
http://www.stevegoldada.com with a searchable Archive at this site divided into
different subjects. To contact Steve Gold directly, write to stevegoldada@cs.com

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Throughout the country, there are thousands of children institutionalized in State and Private Intermediate Care Facilities for the Mentally Retarded, as well more than 60,000 adults institutionalized in these ICF-MRs.

Far too many children and adults remain institutionalized in ICF-MRs due to the lack of available community-based services. The Supreme Court in the Olmstead decision stated that "the ADA stepped up earlier measures to secure opportunity for people with developmental disabilities to enjoy the
benefits of community living," and recognized that Medicaid's "preference for treatment in the institution over treatment in the community ... [is] used in the past tense." For children and adults in large ICF-MRs, the "past tense" has not yet occurred.

Lack of funding to support community services when a child or adult leaves an institution remains a barrier in many States. Medicaid waiver services often have long waiting lists for adults and children. Too few States fully utilize the Early Periodic Screening, Diagnosis and Treatment provisions of Medicaid to provide the full range of community-based services for children.

While families may want their child at home, funding is often available only for institutional services. Research has shown that the longer children are institutionalized, the more significant the negative effects on their development.

"Money Follows the Person" is one option that should be considered to afford true 'choice'. Congress recently amended the Medicaid Act to provide States with the opportunity to use MFP. Now's the time to reduce the unnecessary institutionalization of persons in ICF-MRs.

One reason that States may be hesitant to adopt this policy is that when an individual moves out of an ICF-MR, another individual may fill the institutionalized bed, exacerbated because of the inadequate
community-based services. One way to meet this objection is to decertify beds in the ICF-MR system. The funds spent on the child in the facility would simply transfer to the community. This decertification could be done without significant disruption to ICF-MR providers by taking the beds off-line at the beginning of the year through an adjustment to the state "bed plan." This strategy is particularly appropriate in large facilities with a history of vacancies.

Another reason States have not opted for Money Follows the Person for children and adults in ICF-MRs is that private ICF-MRs are a huge business, and private ICF-MR providers want to protect their business interests.

The ICF-MR system is neither efficient nor consumer friendly. Services should be truly market driven which requires real choice. In most states, ICF-MR services are determined by the supplier (i.e., the provider) and not by the demand of the consumers. As long as providers control the services available, individuals are denied the right to services based on the principle of self-determination. Individuals are denied 'choice' and the State loses the opportunity to save costs by moving children to a more consumer directed model.

Money Follows the Person is an opportunity to confront the strangle hold that the private ICF-MR provider base has on delivery of services, if advocates push for real choice.

As States begin to change the delivery of services and supports in Nursing Facilities, should not we do the same for persons in ICF-MRs who want out? Here is a breakdown by State (as of June 30, 2004) for children in ICF-MRs. The data is from http://rtc.umn.edu/docs/risp2004.pdf, Table 1.17.

% of Children in Large State ICF-MRs

AR 5.7% of the ICF-MRs residents are 21 or under;
CA 4.2% of the ICF-MRs residents are 21 or under;
CO 3.3%of the ICF-MRs residents are 21 or under;
FL 7.7%;
GA 7.4%;
IL 2.2%;
IN 2.3%;
IA 14.9%;
KS 6.2%;
KY 21.3%;
LA 17.4%
MD 3.4%
MI 7.8%
MN 15.4%
MS 10.8%
MO 5.2%
MT 9.2%
NE 3.2%
NV 11.6%
NJ 1.1%
NY 12.8%
NC 2.5%
ND 1.4%
OH 1.7%
OK 3.5%
SC 10.7%
SD 24.4%
TN 1.3%
TX 5.3%
UT 2.2%
VA 1.9%
WA 1.7%
WI 5.9%
WY 1.9%