Advocating for Dignity and Choice for Persons
with Developmental Disabilities
Frequently Asked Questions
Agency for Persons with Disabilities (APD) & Other Government Agencies (DD) & Social Service Programs (Means Tested)
Q. What is Florida’s lead agency for programs for persons with developmental disabilities (DD)?
A. The Agency for Persons with Disabilities - http://www.apd.myflorida.com
This is the starting point of entry for families looking for services for persons with developmental disabilities. Each county/district has a local office.
Q. What is Medicaid?
A. Medicaid is a federal-state health insurance program for indigent persons. If a person is eligible for SSI monies, even only $ 1.00, Medicaid health insurance will follow.
The Medicaid program for persons with developmental disabilities is divided into 2 primary categories: the institutional program (ICF/DD = Intermediate Care Facilities for the Developmental Disabled) and the community program (Medicaid waivers - called 4 Tiers) For further information, go to: http://www.fdhc.state.fl.us/medicaid/
Q. What is the “developmental disabilities” (DD) Medicaid Waiver (Tiers Program)?
A. The DD Medicaid Waiver is currently actually 4 Medicaid waivers referred to as tiers. See below:
The Agency for Persons with Disabilities received approval to redesign the Medicaid Waiver System & implement a “4 Tier” (4 Medicaid Waivers systems).
The Legislature created 4 waiver tiers for people who receive services under the DD Waiver, the FSL Waiver, or the Consumer-Directed Care Program. Such individuals and/or their families are to be notified of their tier assignment.
The Legislature imposed annual limits on how much the State will spend for services for people in 3 of the 4 tiers:
Funding limits:
Tier 1: No limit
Tier 2: $ 55,000.00
Tier 3: $ 35,000.00
Tier 4: $ 14,792.00 (FSL cap)
For more information on APD, call 1-866-APD-CARES or visit http://www.apd.myflorida.com.”
WEBSITES:
For up-to-date information on the Tiers, go to:
www.apd.myflorida.com/waiver/tiers.htm
www.apd.myflorida.com/waiver/support-coordination/talking-points.htm
www.apd.myflorida.com/waiver/understanding-waiver-tiers-brochure.pdf
See also:
Http://www.advocacycenter.org/news/APD.html
Q. Does the DD Medicaid waiver transfer to Florida from another state?
A. No, one must re-apply upon moving to Florida. For the waivers, the waiting list is years long. If you are deemed “in crisis,” you are pushed to the top of the waiting list, while everyone else is moved further down. The three most critical criteria to prove “crisis” are: (1) homeless; (2) no caregiver; or (3) a danger to oneself or others.
Q What is the “disabled adult child” (DAC) benefit?
A. This is a Social Security Administration(SSA) cash benefit available to adults who were disabled prior to age 22, and whose parent is now deceased, retired, or on SSA disability. Medicare health insurance may follow. If the person was previously on SSI & Medicaid, the SSI is frequently lost, but the DAC benefit is typically larger. The Medicaid, however, is not lost.
For more information, go to: http://www.ssa.gov/dibplan/dacpage.shtml
Q. What is the “consumer directed care” (CDC+) program? .
A. Consumer Directed Care Plus (CDC+) is a Medicaid program in Florida that gives the consumer the opportunity to hire workers and vendors to help with daily needs such as housecleaning, cooking and getting dressed. Your paid workers may even be family members or friends.
Go to: http://www.apd.myflorida.com/cdcplus/ - AND -
Q. What is the “Developmental Disabilities Act?”
A. DEVELOPMENTAL DISABILITIES ASSISTANCE & BILL OF RIGHTS ACT
OF 2000
42 United States Code 15001
The purpose of this title is to assure that individuals with developmental disabilities and their families participate in the design of and have access to needed community services, individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life, through culturally competent programs authorized under this title, including specifically -
(1) State Councils on Developmental Disabilities in each State to engage in advocacy, capacity building, and systemic change activities that-
(A) are consistent with the purpose described in this subsection and the policy described in subsection ( c ); and
(B) contribute to a coordinated, consumer- and family-centered, consumer- and family-directed, comprehensive system that includes needed community services, individualized supports, and other forms of assistance that promote self-determination for individuals with developmental disabilities and their families;
In Florida: Florida Developmental Disabilities Council (“The DD Council”)
Debra Dowds, Executive Director
124 Marriott Drive, #203
Tallahassee, Florida 32301
850/922-5366
E-mail: .(JavaScript must be enabled to view this email address)
(2) Protection and Advocacy Systems in each State to protect the legal and human rights of individuals with developmental disabilities;
In Florida: Advocacy Center for Persons with Disabilities (“Advocacy Center”)
Robert E. Whitney, Executive Director
2728 Center View Drive, Suite 102
Tallahassee, FL 32301-5092
Tel. 850/488-9071
Toll-Free: 1/800/342-0823
E-mail: .(JavaScript must be enabled to view this email address)
(3) University Centers for Excellence in Developmental Disabilities Education, Research, and Service [UCEDD] - (f/lk/a University Affiliated Programs)
(A) to provide interdisciplinary pre-service preparation and continuing education of students and fellows, which may include the preparation and continuing education of leadership, direct service, clinical, or other personnel to strengthen and increase the capacity of States and communities to achieve the purpose of this title;
(B) to provide community services-
(I) that provide training and technical assistance for individuals with developmental disabilities, their families, professionals, paraprofessionals, policy-makers, students, and other members of the community; and
(ii) that may provide services, supports, and assistance for the persons described in clause (I) through demonstration and model activities;
( C ) to conduct research, which may include basic or applied research, evaluation, and the analysis of public policy in areas that affect or could affect, either positively
In Florida: Mailman Center for Child Development at the
University of Miami School of Medicine (Pediatrics)
Daniel Armstrong, Ph.D., Director
1601 N.W. 12th Avenue
Miami, Florida 33136
Tel. 305/243-6801
E-mail: .(JavaScript must be enabled to view this email address)
Florida Center for Inclusive Communities
Department of Child & Family Studies
Louis de la Parte Florida Mental Health Institute
University of South Florida
Lise Fox, Ph.D., Director
13301 Bruce B. Downs Blvd., MHC 2113A
Tampa, Florida 33612
Tel. 813/974-3126; Toll Free: (866) 818-4797
E-mail: .(JavaScript must be enabled to view this email address) - or - .(JavaScript must be enabled to view this email address)
Exceptional Special Education (ESE)
Q. What is an “IEP” (Individualized Education Plan)?
A. This is a federal designation due to a federal law (P.L. 942) that requires persons with developmental disabilities to be afforded a free, appropriate special education program. At least annually, the individual and their family meets with the school staff to go over the educational goals for the coming year.
Q. What can a family do if they are not satisfied with the IEP that the school offers?
A. The family can request that a “stay put” provision be implemented, wherein subject to another IEP, the disabled student’s program does not change. You may hire an attorney or another “advocate” to help you at the IEP.
Q. What are “center schools?”
A. Center schools are schools that are designated 100% for students with exceptionalities. This is the opposite of mainstreaming/inclusion wherein the student with developmental disabilities attends a “typical” school and mixes in, part-time or full-time, with “typical” students.
Legal Inititatives
Q. What can an individual do to appeal a denial of (or reduction in) Medicaid waiver services?
A.
1. Upon receipt of your notice from the Agency for Persons with Disabilities, you have deadlines that must be adhered to. Normally, if you file for your appeal within 10 days, you may continue receiving services until your appeal is heard and ruled upon. If you request an appeal after 10 days but within the deadline (normally 30 days), then your services could temporarily be reduced or eliminated. The letter from APD tells you where to send your letter requesting an appeal. Your independent support coordinator should assist you with the process.
2. What about legal representation?
You may hire private counsel to represent you. You may represent yourself, i.e.,
you may appear “pro se.” You may be able to hire a public interest law firm
to represent you at a reduced or no fee.
3. What are some of the public interest law firms in Florida?
A. Agency for Persons with Disabilities (Tallahassee)
B. Southern Legal Counsel (Gainesville)
C. Three Rivers Legal Services (Gainesville)
D. Florida Coastal School of Law (Jacksonville) - some pro bono programs
E. Legal Aid in the various state counties
Q. What is the “Olmstead” decision?
A. THE “OLMSTEAD” DECISION
In the late 1990's, two residents at a Georgia state institution for persons with mental illness sued the State of Georgia because they wanted to move into a community-based program but they were not permitted to do so. Although their treatment professionals eventually concluded that each of the residents could be cared for appropriately in a community-based program, the State of Georgia was not able to satisfy their request.
Relying in great part on the Americans with Disabilities Act (“ADA”), a class action lawsuit was eventually filed, and the case made itself up to the U.S. Supreme Court where it was decided (1999). Justice Ruth Bader Ginsburg wrote the opinion for the Court, as highlighted below:
º States are required to provide community-based treatment for persons with mental disabilities when:
[A] the State’s treatment professionals determine that such placement is appropriate;
[B] the affected persons do not oppose such treatment, and,
[C] the placement can be reasonably accommodated, taking into account:
[I] the resources available to the State, and
[ii] the needs of others with mental disabilities.
º Unjustified isolation, we hold, is properly regarded as discrimination based on disability. But we recognize, as well, the States’ need to maintain a range of facilities for the care and treatment of persons with mental retardation.
º”We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings.”
Despite clear, unambiguous language to the contrary, the Olmstead decision is being misrepresented to stand for the proposition that all institutions must be closed, and/or that persons residing in institutions must be hurriedly moved out. Such a position is simply a misrepresentation of the Olmstead decision.
Employment
Q. What are “Supported Employment” opportunities in Florida?
A. For up-to-date information, go to: http://www.flse.net/ and http://www.flsupportedemployment.com/
Q. How does the income received affect government benefits?
A. If one is receiving SSI, each dollar received from employment reduces one’s SSI payment $ 1 for each $ 1 earned. At some point, the individual may lose all SSI funding, which might result in loss of Medicaid. Similarly, money gifted directly to the individual reduces one’s SSI payment $ 1 for each $ 1 earned. At some point, the individual may lose all SSI funding, which might result in loss of Medicaid.
There are very technical rules for payments that are deemed “in kind support and maintenance” (shelter & food). It is critical that anyone handling funds (such as the Trustee of a special needs trust), be knowledgeable about the distribution rules in order not to jeopardize the disabled person’s public benefits.
Estate & Incapacity Planning
Q. What is Guardianship?
A. Until age 18, one’s parents are the natural guardians, unless the minor receives over $ 15,000.00 and then a minor guardianship (of the property) is required.
At age 18, if an individual is unable to manage some or all of their affairs, a guardianship may be required. One can seek appointment as guardian of property, guardian or person, or guardian of both person & property. One may have plenary (full) powers over their “ward,” or one may only have limited powers.
In a traditional guardianship, the prospective guardian seeks appointment and an independent committee as well as a court appointed attorney evaluate the competency of the proposed ward (the alleged incapacitated person).
Appointment of a “guardian advocate” (not a “traditional guardian”) does not require an adjudication of incapacity. The individual ward’s rights are not removed. In all other respects, requirements for the guardian are the same as a traditional guardian. It is important to note that, since the ward is never adjudicated incapacitated to any degree, and, therefore, no rights have been removed, it is possible that the guardian advocate may lack legal support to advocate for certain matters which may be in conflict with a government agency. Representation by legal counsel is not required for a guardian advocacy.
If the individual has little or no cognitive impairment, advance care directives, e.g., durable power of attorney, health care surrogate designation, and living will, may be all that is needed. However, as for any “competent” adult, parents need to understand that their legal authority over their child ends at age 18, and advance directives may not give them authority to act in lieu of their adult child as long as the adult child chooses to act independently of their parents’ authority. This is a particularly fact-specific scenario, and each case is different.
It is important that you speak with a guardianship attorney if you have questions regarding guardianship. Sometimes less restrictive measures are possible, e.g., advance directives (health care surrogate designation, living will, durable power of attorney, and do-not-resuscitate orders).
Q. What kinds of guardianship are available in Florida for persons with developmental disabilities?
A. Traditional guardianship (plenary or limited); voluntary guardianship; guardian advocacy (Chapter 393)
Q. How do we protect our child from losing government benefits? (What is a “Special Needs Trust?”)
A. Families & friends of persons with developmental disabilities need to be especially cautious that their loved ones does not directly inherit assets or a steady, mandatory income stream if that loved one is receiving means-tested governmental benefits (SSI or Medicaid). The family member or friend may make an estate plan in which the persons with developmental disabilities is: (1) expressly disinherited; or, (2) provided for within a special needs trust (SNT). A “SNT” with the funds of someone other than the person with developmental disabilities is referred to as a 3rd party SNT. You may make such a 3rd party SNT under your Last Will and Testament, or as part of a Trust Agreement.
If a person with developmental disabilities is receiving means-tested governmental benefits (SSI or Medicaid), and that person inherits funds - or - receives monies from a lawsuit - and the receipt of the funds is enough to jeopardize that person’s benefit, then there are some recources: (1) spend down all the money in the month of receipt; or (2) establish a self-settled special needs trust (SNF). There are a variety of self-settled SNTs:
- d4A (requires a Trustee be selected; individual must be under age 65)
- d4B (only for when income is too high for eligibility)
- d4C (a pooled trust wherein a corporate Trustee is already in place -
applicant, if capable, can be settlor of this Trust)
The primary difference between a 3rd party SNT & a 1st party SNT is that upon the death of the disabled beneficiary, a 1st party SNT must have mandatory “pay-back language” of funds for the government, to the extent that funds by the government have been expended on behalf of the beneficiary during the beneficiary’s lifetime. A 3rd party SNT has no requirement for mandatory pay-back to the government.
Residential Options
Q. What is an ICF/DD (Intermediate Care Facility for Persons with Developmental Disabilities)?
A. These are facilities with up to 120 beds, whether public or private, and which are intended to be utilized by persons with profound developmental disabilities. These facilities provide a medical model. The federal term is ICF/MR (Intermediate Care Facility for the Mentally Retarded).
Q. Are there any DD public/state institutions in Florida?
A. Yes, there are three such facilities: (1) Tacachale in Gainesville; (2) Sunland in Marianna; and (3) Gulf Coast Center in Fort Myers (closing).
Q. Are there any large private facilities in Florida?
A. Yes, serving a little over 2,000 individuals. For information about licensed private agencies contact the Agency for Persons with Disabilities. Another good resource on private facilities is the Florida Association of Rehabilitation Facilities in Tallahassee - this is a private organization, unaffiliated with any government agency.
Q. What is “supported living?” Independent living with support!
A. For more information, go to: “A Guide To Supported Living In Florida” A Guide to Supported Living in Florida. Produced for the Florida Developmental Disabilities Council. By Program Design, Inc. 01/05 ix. INTRODUCTION ... www.apd.myflorida.com/customers/living/guide/introduction
We need your help to help them.
Help us to make a difference in the lives of these children.
Answers to your questions.
