THE FUTURE
OF FLORIDA'S LARGE RESIDENTIAL CENTERS FOR PERSONS WITH MENTAL RETARDATION
AND/OR DEVELOPMENTAL DISABILITIES
PROPOSED
BY FLORIDA’S VOICE
ON DEVELOPMENTAL DISABILITIES
(FVDD)
OCTOBER 2004
THE PROBLEM
How
can the State of Florida meet the varying needs of its growing population
of persons with mental retardation and other developmental disabilities
while governmental funding continues to trail the increase in financial
and service needs?
A
Florida “Snapshot”
l.
Florida continues to rank as one of the poorest funding states for social
services.
2. The
Fla. Dept. of Children & Family Services reports that at least
23,280 adults and children with mental retardation & other developmental
disabilities are receiving services in the community instead of in
an institution, but advocates estimate that at least 15,000 people
are on waiting lists for services, and advocates suggest that at least
an additional l0,000 persons have been discouraged from even seeking
help.
3.
Average costs: private ICF's - $ 4l,000 to $ 94,000 a year per person;
state
DSI's - $ 76,000 to $ 85,000 per person.
4.
Even if all current Medicaid funds were perfectly targeted to meet the
most pressing needs of the poorest people with the most severe disabilities,
only 44% of need would be met. (Managing Florida's Future, The Commission
on Long Term Care in Florida, December l5, l995.)
5.
A proliferation of federal class action lawsuits has proven the primary
impetus in effecting change (Doe v.Chiles/Bush; Prado-Steiman; Olmstead;
etc.).
6. Resentment
builds when one family seems to be receiving services while another
family is under-served or not served.
7.
Approximately 90% of the MR population has “mild” MR; whereas the
remaining 10% have moderate, severe, or profound MR.
8.
While community services remain inadequate, state
residential
facilities face placement moratoriums/downsizing, and private providers
are deterred from developing Florida residential properties or community
programs due to provider cutbacks [see Brown v. Bush: pending settlement
agreement would close Landmark in Miami by summer 2005, & Gulf
Coast Center in Ft. Myers by summer 2010].
WHAT
CAN BE DONE TO RESOLVE THESE PROBLEMS?
A
NEW VISION FOR LARGE RESIDENTIAL FACILITIES
FOR
PERSONS WITH MENTAL RETARDATION/DEVELOPMENTAL DISABILITIES
Bring
"the community" to the centers and
the centers become part
of "the community!"
By
redefining the purpose and uses of Florida's large (over 6-beds) residences
for persons with mental retardation and developmental disabilities, Florida
has an opportunity to reduce costs while meeting the varying needs of this
special population. The proximity of Florida’s four remaining developmental
service institutions (DSI’s) to university programs makes them ideally
suited as regional medical/dental/teaching centers.
#1
Teaching centers: Students in the fields of medicine, psychology,
therapy (physical/speech/occupational), nursing, special education, etc.
can and should be training at these larger centers. Colleges &
universities can contract with the centers as the University of Florida
Medical School has done at Tacachale in Gainesville, Florida, where they
are currently doing innovative seizure disorder and autism research. Novasoutheastern
University and the University of Florida Schools of Dental Medicine are
trying to establish comprehensive special needs dentistry programs.
a)
Special needs dentistry training is critically needed.
b)
Caretakers and professionals can receive training in the reduction &/or
elimination of maladaptive behavior(s) such as self-abusiveness, aggressiveness,
inappropriate conduct, etc. Maladaptive behavior has been one of the primary
reasons that certain community residents are returned or admitted to larger
centers. Exceptional student education (ESE) students could receive training
here.
Community
physicians and dentists are oftentimes unskilled
in
caring for clients with special needs, and/or they are not Medicaid providers.
Medicaid reimbursement to providers is grossly inadequate. On-site training
and on-site services would correct this problem.
#2
Day programs for adult MR/DD (over 22 yrs.) - The possibilities
are unlimited as to programs from daily living skills and vocational rehabilitation
to studying the arts. Adults living in the community can study/work
at larger centers during the day. Some suggestions:
a)
design some cottages as realistic life skills training "homes" for independent
living skills such as hygiene,money management skills, housekeeping, etc
b)
sheltered workshops;
c)
swimming and other sports;
d)
arts & music [e.g.,Ann Storck Center in Ft. Lauderdale]
#3
Respite care center (year-round): This is probably one of the biggest deficits
in the social service system - care givers in the community need
a break! Large facilities could provide temporary residential placement
for clients.
#4
Special events site: Activities such as the Special Olympics, and local/state/national/international
meetings concerning mental retardation and developmental disabilities could
be held on the grounds of the large centers. Fees could be charged for
the use of the facilities. There are suitable hotels for guests in easy
driving distance of most centers.
#5
Retirement Community: The largest facilities would make excellent
settings to develop retirement homes for the elderly and their MR/DD
children. The elderly MR are often rejected by regular nursing homes!
Those elderly MR who currently reside independently would be welcome as
well.
a)
Florida's Association for Retarded Citizens (the ARC) came up with a similar
concept referred to by them as "a continuing care community."
See:
"Maximum Use of State Developmental Services Institution Grounds, Buildings
and Resources," ARC Florida, January l5, l996.
b)
At the DSI's (developmental service institutions) some cottages are
in place and volunteers could do additional construction [e.g. HABITAT
FOR HUMANITY]
#6
Recreational programs for persons of all ages with mental retardation
& developmental disabilities - Why should these children be deprived
of the experience because of distance and/or expense?
Possible
programs:
a) Summer camp (Ex: Gulf Coast’s Camp Sunshine)
b) Carnivals/circus;
c) Plant/agricultural shows;
d) Craft fairs [exhibit work of MR/DD participants];
e) Petting zoo; horse shows;
f) Community/center athletic meets
i) Utilize swimming pools for therapy AND special
athletic competitions
ii)Basketball, volleyball, etc.
g) Musical performances and art shows (client participation both in-house
& community guests);
h) Dances/holiday parties for residents & non-residents
i) Horses for the Handicapped - especially suitable
for facilities with large tracts of open land
Ex: The Angelus, a private facility in Hudson,
currently has miniature horses which the residents
are able to groom through openings in the corrals
#7
Pre-schools for "at risk" young children: Large centers with expansive
playing fields and equipment make ideal pre-school sites. Children
considered "at risk" for disabilities could be coupled with "normal" pre-schoolers
(already being done at the Ann Storck Center in Fort Lauderdale, Florida).
#8
Public School classrooms: Large campuses provide ample
space
and facilities to host exceptional student education classes, esp. for
those for whom travel to/fro is difficult.
The
Sandor Wiener School of Opportunity charter school, as
supported
by the ARC of South Florida, opened 8/26/02 on
the
grounds of the Community of Landmark in Miami.
#9
Expanded beds for the huge waiting lists of severely and profoundly
mentally retarded/physically disabled children & young adults - necessary
to accommodate the growing waiting lists due to increased population growth
(with concurrent growth of the disabled population) and advanced medical
technologies capable of saving lives (e.g., smaller and smaller preemies,
near drowning victims, severe accident victims, etc.). Economics
of scale make such centers cost effective for those with severe/profound
cognitive and physical limitations who need intensive, on-site therapy,
specialized equipment, medical attention, full-time care and supervision.
#10
Emergency Shelters - Hurricane Andrew (l992) literally blew
away
some special needs residences. Approximately 96 United Cerebral Palsy clients
were temporarily placed at Landmark in Miami until they could be transferred
to another facility. In case of natural disasters, the unexpected, abrupt
closure of residences, or the removal of a client from a group home, the
larger facilities could provide temporary (or permanent) housing.
#11
Private Providers - Many private providers who would develop
large tracts of land for private residential communities,
and
thereby, in part, relieve the government of its job as
primary
residential provider, are not coming to Florida
because
of restrictive statutory language and various
regulations
intended to discourage congregate living settings for persons with developmental
disabilities. These private providers could offer Floridians additional
residential options AND afford community day programs.
#12
Regional university centers - Florida’s four state developmental
service
centers (DSI’s), also known as intermediate care facilities for the developmentally
disabled (ICF/DD’s) are
ideally
situated to coordinate programs with students and staff
at
nearby vocational schools, colleges, and universities:
(1)
Sunland (in Marianna) - Florida State University, in Tallahassee, is a
mere one hour away by car, and now has
a 4 year medical school, in addition to its other numerous
undergraduate and graduate programs.
(2)
Tacachale (in Gainesville) - The University of Florida is
located in Gainesville, and boasts both a medical and a
dental school, in addition to its other programs in
exceptional student education, psychology, etc.
(3)
Gulf Coast Center (in Ft. Myers) - Besides Florida Gulf Coast University
(Ft.Myers), other major universities are in easy driving distance and/or
have branch campuses near-by, e.g.,
University
of South Florida (Tampa), University of Central Florida (Orlando), etc.
(4)
The Community of Landmark (in Miami) - Landmark is situated
equidistant between the University of Miami, Nova
Southeastern
University, FIU, FAU, etc., which have medical, osteopathic, dental, exceptional
student education, and other related programs.
Numerous
other smaller universities, community colleges, and
vocational
schools are nearby, and could provide additional
faculty
and/or students for teaching and services.
Larger
private ICF’s may also be able to provide services to
non-residents
living in their communities.
The
ICF’s can offer students, faculty, professionals, residents, & the
community unlimited services and programs.
HOW
CAN THIS PROPOSAL BE IMPLEMENTED?
A.
Financing
By
expanding the services available to residents and community clients, larger
facilities can reduce the huge waiting lists for special needs services
in Florida.
Funding
of these programs will be met in the following ways:
l)
Federal/state/community governmental funds [incl. bonds];
2)
Contract monies through collaboration between the facility & colleges/agencies/companies(public/private);
3)
Grant monies;
4)
Special license plates;
5)
Private and corporate donations (incl.in-kind donations),
including the establishment of a “direct support
organization” for Florida’s Department of Children and
Families
B.
Statutory Revisions
Certain
restrictive Florida statutes will need to be amended or repealed in order
to implement this plan. For example:
1)
Chapter 393 - All phase-down/abatement language vis-
a-vis
the 4 developmental service institutions (DSI's) must
be
removed or modified in order to implement this plan.
2)
A study must be undertaken to review the Federal ICF/MR regulations to
determine which regulations are inapplicable in certain cases and, therefore,
result in unnecessary additional costs.
3)
Florida’s Medicaid program and its reimbursements must
be
improved so that more providers will become Medicaid providers, esp. in
the area of dental care; and full dental services must be made available
to all regardless of age.
4)
The 10% density requirement for supported living
under
FAC Rule 65B-11 must be repealed.
5)
“Community residential homes” under Fl.Statute 419.001
should
not have to be established more than 1,000 feet
from
another such home in order to be allowed to waive
notification
provisions to local government.
Respectfully
submitted by Florida’s Voice on Mental Retardation (FVDD), a statewide
all volunteer, non-profit organization comprised of family and friends
of persons with mental retardation and related developmental disabilities.
FVDD advocates for a full continuum of educational, medical, programmatic,
recreational, residential, therapeutic, and vocational options based
upon
individual needs and choices.
Florida's
Voice on Developmental Disabilites, Inc.*
P.O. Box 24531
Fort Lauderdale, Florida 33307
(954) 975-5159
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