1. Date: August 3, 2009
Regarding: Congressman Keith Ellison
Forum on Health Care Disparities in the African American Community
Saturday – August 1, 2009 10:00 AM – 12:00 PM
North Point Health & Wellness Center 1313 Penn Avenue North Minneapolis, MN 55411
From: Bonnie Jean Smith
Parent advocate/trainer, author of ‘How Big is the Fly? Asking the Right Questions’
Mailing Address: 1334 Washburn Ave. North Minneapolis, MN 55411
Phone: Home: 612.522.1073 Cell: 612.558.5956 Work: 952.838.1365
E-mail: TAP55411@aol.com
Background:
1950’s Society believed parents and teachers did not the skill to serve people with DD in a community. Families had two
choices: keep their children with no support services or send them to a large institution.
1987 Welsh decree class action suit against the State of Minnesota resulted in Medicaid funds were diverted from institutional
setting into community based settings with supports [waivered services].
1990 Senator Linda Berglin required MN Department of Human Services to collect data on families waiting for waivered
services. Minority families 'waiting' for an MR/RC waver are 'less likely to be receiving services above and beyond case
management as they wait'. Minority families are not getting supplemental special education services [including medically
necessary AT devices and services] for their children compared to their white counterparts.[DHS MEMORANDUM April 10,
1996 'Utilization of services for persons with development disabilities by Minnesota's of minority race and/or ethnic origin"].
1997 Minnesota Extended Treatment Options [METO] was developed by the Minnesota Department of Human Services for
individuals with developmental disabilities who committed crimes and were found not responsible by the court for their actions
under civil commitment rule 20. Advocates and state of Minnesota said that individuals with developmental disabilities needed
a humane alternative to prison. The cost of METO in1997 was approximately $500 per day or $180,000 a year. In 1997
through 2008 Medicaid dollars paid 50 percent of the cost per person.
Current Issues:
Minority families 'waiting' for an MR/RC waver are 'less likely to be receiving services above and beyond case management as
they wait' just like in 1990’s.
Community based outreach efforts for African American families have improved knowledge of service for some, however,
institutional racism combined with society’s beliefs that people with developmental disabilities are sick, sub-human organisms
and a menaces to society are still prevalent.
Today Minnesota Extended Treatment Options [METO] patients are disproportionally African American young people with
developmental disabilities who often have the State of Minnesota as their conservator. Today the cost of METO is $1,129 per
day or $406,440 per year paid with all State of Minnesota dollars no Medicaid match beginning in 2008.
A class action lawsuit has been filed in United States Federal Courti against Minnesota Extended Treatment Option for
abusing people with developmental disabilities. Patients at METO were routinely restrained in a prone face down position and
placed in metal handcuffs and leg hobbles, causing them injuries and to struggle, cry and yell. METO also placed patients in
seclusion rooms for extended time periods, and deprived them of visits from family members.
Recommendations:
1. Congressman Ellison to hold inclusive community discussion regarding the unique needs of individuals with developmental disabilities
and their families.
2. Directly address labor issues that are barriers to community based living for people of all ages with disabilities and long-term illnesses.
We need to ensure that all Americans, including African American individuals with developmental disabilities and their families have the
opportunity to learn and develop skills, engage in productive work, choose where to live and participate in community life.
3. Close METO, divert the $406,440 per year paid with all State of Minnesota dollars into community based options.
Sincerely,
Bonnie Jean Smith

2. Definitions
 Definition of Developmental Disabilityii:
Developmental disabilities are severe, chronic disabilities attributable to mental and/or physical impairment, reasons: self-care, receptive and
expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency, as well as the continuous
need for individually planned and coordinated services.
Medical Model Services [Example would be Minnesota Extended Treatment Option METO]
 Persons with disabilities as sick:iii Those who need to be cured of a dread disease; referred to as patients; in
need of professional care in a hospital setting.
 Persons with disabilities as sub-human organisms: Perceived as "animal-like" or "vegetative," or as "garden
variety" or cultural-familial retardation; treated like animals in institutions; possessing less than full humanity and not
deserving of all human rights; referred to as "so-called human beings."
 Persons with disabilities as menaces to society: Perception that people with disabilities are somehow evil and
represent a danger to themselves and to society; this perception leads typically to a concern for and measures
leading to the destruction, segregation, containment, control, and persecution of persons with developmental
disabilities.
Community Based Services [Consumer Director Community Support Waivered Service]:
 The New Freedom Initiative (NFI) iv wasannounced by President Bush on February 1, 2001, followed up by the Executive Order 13217
on June 18, 2001. The initiative is a nationwide effort to remove barriers to community living for people of all ages with disabilities and
long-term illnesses. It represents an important step in working to ensure that all Americans have the opportunity to learn and develop
skills, engage in productive work, choose where to live and participate in community life.This initiative supports states' efforts to meet the
goals of the Olmstead v. L.C. Supreme Court decision issued in July 1999 that requires states to administer services, programs, and
activities "in the most integrated setting appropriate to the needs of qualified individuals with disabilities."
 The Olmstead decision interpreted Title II of the Americans with Disabilities Act (ADA), which gives civil rights and protections to
individuals with disabilities and guarantees equal opportunity for individuals with disabilities in public accommodations, employment,
transportation, State and local government services, and telecommunications. The complete Olmstead decision, and Executive Order
13217, can be accessed below under "Related Links outside CMS."
 MN DHS reported 1035 people were ‘waiting’ for AT [DHS’s “Home and Community Based Services for Persons with Mental
Retardation and Related Services ““AReport to the Legislature” October, 2000, pp. 11] Minnesota parents of children with multiple
disabilities were going to other agencies [DHS & MDH] for their children's special education services.
 *This was not the case for students of color or English Language Learners who are not able to access special education services
through Minnesota's Medicaid wavered services program.
 *Minority families 'waiting' foran MR/RC waver are 'less likely to be receiving services above and beyond case management as they
wait'. Minority families are not getting supplemental special education services [including medically necessary AT devices and services]
for their children compared to their white counterparts. [DHS MEMORANDUM April 10, 1996 'Utilization of services for persons with
development disabilities by Minnesota's of minority race and/or ethnic origin"] .
See: Glenn, Eddie, African American Women with Disabilities: An Overview, Howard University Research and Training Center
http://www.circad.org/circad/african_american_women_with_disa.htm
i
See Case 0:09-cv-01775-DWF-FLN Document 3 Filed07/30/09. Court file no: 09-CV-1775DWF/FLN. Attorneys forPlanitiffs Johnson& Condon, P.A. Shamus
P. O’Meara. TheDefendants include theMinnesota Department of Human Services
ii
See: http://www.acf.hhs.gov/index.html
iii
See: www.mnddc.org
iv
See: http://www.cms.hhs.gov/NewFreedomInitiative/