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Current Legislation:

The United States Department of Education, Office of Special Education and Rehabilitative Services (OSERS), has developed the following web site that can be used to download the final regulations for Individuals with Disabilities Education Act (IDEA) '97 Amendments - link to
http://www.ed.gov/offices/OSERS/OSEP/index.html

Council of Disability Rights in Chicago, IL - offer a guide to disability rights and other practical information - call (3312)444-9484 or link to
http://www.disabilityrights.org

 

Local Law Expert: Robert H. Farley, Jr.

I.   The Legal Rights of Disabled Children (3-21)  

II.   The Legal Rights of Disabled Children/Adults (21+ or          The Rights after Special Education Services Ended)

III. Estate Planning for Families with Disabled Persons


Foreword:

THE LEGAL RIGHTS OF CHILDREN & ADULTS
WITH DEVELOPMENTAL DISABILITIES

    Robert H. Farley, Jr., is both an attorney and the father of a disabled child. He has used his knowledge and legal skills to achieve the appropriate education for his child and is willing to assist other parents to obtain the appropriate services for their child. The information provided at this web site is general information and should be only used as a starting point to begin to understand some of the legal protections afforded the disabled. Additional resources (links) are listed below which will provide parents and advocates more detailed information than contained on this web page.

 

I. The Legal Rights of Disabled Children (Ages 3 - 21)

General Overview| Child With A Disability | Special Education | Related Services | Least Restrictive Environment / Mainstreaming / Inclusion | Extended School Year (Summer School)|Extended School Day|Stay Put Provision - (Maintenance Of Current Educational Placement) | Due Process Decisions In Illinois (7/1/97 - 6/1/99) | Parental Reimbursement / Attorney Fees|Conclusion|Links

General Overview
    Children with disabilities are entitled under the law (Individuals With Disabilities Education Act - IDEA) to a ‘free appropriate public education’ that emphasizes special education and related services designed to meet their unique needs and prepare them for employment and independent living. These services can begin at the age of 3 and continue through age 21. The services are to be provided in the least restrictive setting. These services will be provided during the school day and if necessary for the child, will extend after school (extended school day) and during the summer (extended school year).

    No necessary or appropriate service can be denied to the child because of the cost. The fact that the school district claims that it cannot afford the program for the child or does not have the staff to provided the necessary services is not defensible under the law. The school district must provide the child the "appropriate services" for that child, irrespective of the cost.

    After a child is initially evaluated (within 45 days after request for evaluation) and found to be qualified as a ‘child with a disability,’ a written ‘individualized education program’ (IEP) is developed by the IEP team, which will include, among others, the parents of the child with a disability; the regular and special education teachers; and a representative from the school district or special education department. The parents have an active role in this process and under the law are considered equal partners with school personnel in making decisions.

    The IEP will address, among other matters: (i) a statement of the child’s present levels of educational performance; (ii) a statement of measurable annual goals, including benchmarks or short-term objectives; (iii) a statement of the special education and related services and supplementary aids and services to be provided to the child to advance appropriately toward attaining the annual goals; (iv) an explanation of the extent, if any, to which the child will not participate with nondisabled children in the regular class; (v) the projected date for the beginning of the services and the frequency, location and durations of those services; and (vi) a statement of how the child’s progress toward the annual goals will be measured and how the child’s parents will be regularly informed of their child’s progress toward the annual goals and the extent to which that progress is sufficient to enable the child to achieve the goals by the end of the year.

    The IEP shall be reviewed periodically, but not less than annually to determine whether the annual goals for the child are being achieved. The IEP shall be revised during the school year to address any lack of expected progress towards the annual goals.

    If the parents and school personnel cannot reach a consensus, there are certain procedural rights where either the parent or school personnel can seek resolution of any disagreement by initiating an impartial due process hearing. For more information concerning the IEP, the federal government has published regulations in a question and answer format which address many issues raised by parents as to how the IEP process works and what are the rights of the parents. These regulations, commonly referred to as "IDEA Regulations, Appendix A" are usually reprinted in any special education manual and can also be obtained by linking to http://www.ed.gov/offices/OSERS/OSEP/index.html.

    Parents have the right to examine all the records relating to their child and to participate in meetings with respect to the identification, evaluation, and educational placement of the child, and to obtain an independent educational evaluation of the child. Parents have the right to present complaints with respect to any matter relating to the identification, evaluation, or educational placement of the child, or the provision of a free appropriate public education to such child.

 

Child With A Disability
    Under the law (Individuals With Disabilities Education Act) (IDEA), the term ‘child with a disability’ means a child (i) with mental retardation, hearing impairments, speech or language impairments, visual impairments, serious emotional disturbance, orthopedic impairments, autism, traumatic brain injury, other health impairments, or specific learning disabilities; and (ii) who, by reason thereof, needs special education and related services.

 

Special Education
    The term ‘special education’ means specially designed instruction, at no cost to the parents, to meet the unique needs of a child with a disability, including - (A) instruction conducted in the classroom, in the home, in hospitals and institutions, and in other settings; and (B) instruction in physical education.

 

Related Services
    The term ‘related services’ means transportation, and such developmental, corrective and other supportive services (including speech-language pathology and audiology services, psychological services, physical and occupational therapy, recreation, including therapeutic recreation, social work services, counseling services, including rehabilitation counseling, orientation and mobility services, and medical services, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability to benefit from special education, and includes the early identification and assessment of a disabling conditions in children.

 

Least Restrictive Environment / Mainstreaming / Inclusion
    To the ‘maximum extent appropriate,’ children with disabilities, are educated with children who are not disabled. Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. Children with disabilities should be mainstreamed to the ‘maximum extent appropriate.’ Children can be removed from regular classes if this is necessary for them to learn.

 

Extended School Year (Summer School)
    Extended School Year (Summer School) must be provided only if the child’s IEP team determines, on an individual basis, that the services are necessary for the child. If the child would experience severe or substantial regression during the summer months in the absence of a summer program, the child may be entitled to year round services. The issue is whether the benefits accrued to the child during the regular school year would be significantly jeopardized if the child is not provided a program during the summer months. Does the child have difficulty recouping what was learned or attempting to be learned over extended weekend breaks; over holiday breaks; and over summer breaks? If there is some evidence that the child has required recoupment time of more than several weeks after summers without continuous, structured programming, the child may be entitled to an extended school year.

    The school district cannot unilaterally limit these extended school year services to only a particular category of disability or unilaterally limit the type, amount or duration of these services. For example, one school district offered to all special education students found eligible for extended school year, a 6 week (Monday through Thursday) summer school program consisting of ½ days. The parents of an autistic child with pervasive developmental delay felt that the program was inappropriate for that child’s needs and requested a more extended summer school program than offered. The school district informed the parents that they were not aware of any other school district providing services during the summer longer than 6 weeks consisting of ½ days. After some initial resistance from the school district (and the likely prospect of litigation from the parents), the parents were able to achieve a 10 week program (Monday through Friday) consisting of a full day of programming for the child.

 

Extended School Day
    As stated above, just as it is inappropriate to assume that a disabled child only needs to attend 180 school days during the year and no days during the summer, it is likewise inappropriate for the school district to assume that conforming to the 6 hour school day suffices for fulfilling the school’s obligation to provide services to the child. If due to the unique needs of the child, the child needs more than 6 hours of services during the school day, the district must provide an extended school day. Given the obvious fact that some children need 24 hours of services (residential placement), there are undoubtedly many children that need services greater than 6 hours and less than 24 hours.

 

Stay Put Provision - (Maintenance Of Current Educational Placement)
    The "stay-put" provision of the law directs that a disabled child shall remain in his/her current educational placement pending completion of any review proceedings, unless the parents and the school district otherwise agree. For example, a child’s ‘current education placement’ (IEP) calls for two hours of direct services of speech therapy per week and the school district wants to reduce the service to one hour per week. If the parents do not agree to the reduction of services, the ‘current educational placement’ of two hours per week remains in place and it is up to the school district to initiate a due process hearing. Another example, is if a hearing officer awarded private placement, the private placement becomes the "current educational placement" and if the school appeals, they must pay for the child’s private placement during the pendency of the appeal.

 

Due Process Decisions In Illinois
A parent or school district may initiate an impartial ‘due process hearing’ at any time regarding any proposal or refusal regarding the identification, evaluation or educational placement of a child with a disability or relating to the provision of a free appropriate public education for the child. The Illinois State Board of Education (ISBE) provides on the Internet, a summary of impartial due process hearing decisions. Each summary identifies the case number, the moving party, the issue or issues in dispute, the student’s disability (if known), the hearing officer’s finding, and whether legal counsel represented the parties. These due process decision summaries can be obtained by linking to www.isbe.state.il.us/spec-ed/due process.htm

Additionally, if you would like to receive a copy of the actual due process hearing decisions summarized, please contact the ISBE at 217-782-5589. Please note that the due process decisions are not precedent-setting in that they represent how hearing officers have ruled after reviewing specific facts placed before them. However, these decisions are a good starting point for parents to begin to understand what is involved in a due process hearing.

 

Parental Reimbursement / Attorney Fees
    A school must reimburse a parent for expenses that it should have paid all along had it developed a proper ‘individualized education program’ (IEP). If for example, the parents decide to go outside and purchase related services (i.e. speech/occupational therapy) or private education, they may be entitled to reimbursement.

    In the event that the parents and school district cannot agree on the IEP and the parents are successful in obtaining the appropriate services for the child as the result of an impartial due process hearing (administrative hearing) or court action, then attorneys’ fees as part of the costs to the parents may be awarded to the parents as ‘prevailing parties’ and the school will have to pay the legal costs of the parents.

 

Conclusion
    The parents of a disabled child need to know that their child is entitled to a free appropriate education and that the individualized education program must address the unique needs of the child. Unfortunately, good or appropriate programs cost money and there is sometimes a reluctance on the part of school officials to commit to the appropriate program. Parents need to know their rights under the law so they can be an effective advocate for their child. Parents need to become educated and need to take the time and obtain a copy of the laws and federal regulations which exist to protect the rights of their disabled children.

 

Links
    In this author’s opinion, two quality web sites on special education law are listed below. These web sites provide information for parents,advocates, teachers and attorneys on special education law, consisting of articles, newsletters, cases and references to other materials which will assist you in advocating for the rights of the disabled.

www.reedmartin.com

www.wrightslaw.com (An excellent resource tool for parents is "Wrightslaw: Special Education Law" which can be ordered from their web site and is reasonably priced)

 

II. The Legal Rights of Disabled Children/Adults (21+ Or The Rights After Special Education Services Ended)

General Overview|Developmental Disability|Medicaid - The Role Of The State And Federal Government |Active Treatment Required Under Medicaid |The Components of Active Treatment |Services Must Be Provided With Reasonable Promptness To All Eligible Individuals| Requirement That Services Must Be Provided In A Community Setting |Conclusion & Unreasonable Waiting Lists For Services Are Unconstitutional

General Overview
    Once the parent achieves services for the disabled child, the parent often wants to know what will happen to their child after he or she attains the age of 21 years. The question often asked, is whether the developmentally disabled child is entitled to services after 21 as a matter of law? The answer, is Yes. However, just as there is resistance to provide the appropriate educational services for the child from age 3 through 21, there is also resistance to provide the appropriate services to the disabled after age 21. The information provided in this section will be more detailed than the section under special education law due to the lack of readily available information on this subject and will reference the federal laws and court cases on this issue. In contrast to special education law, there are few reference materials concerning the subject that the developmentally disabled are entitled to services after age 21 and the failure to provide these services is a violation of their civil rights. (If anyone is aware of any materials which addresses this subject in a comprehensive manner, please pass this information along to me and I will share it on this web page.)

    Under the Medicaid Act, a developmentally disabled child is entitled to ‘medical assistance’ which means that a child is entitled to ‘active treatment’ to help him or her reach their maximum functional capability. (When I use the word ‘child,’ I also mean ‘adult.’) Instead of the child having an ‘individualized educational program’ (IEP), the child is to receive an ‘individual program plan’ (IPP). What this means is that each qualified individual must receive a ‘continuous active treatment program’ consisting of needed interventions and services in sufficient intensity and frequency to support the achievements of the ‘individualized program plan.’ For some individuals, the services offered to them will be placement in an ‘intermediate care facility’ or a ‘group home.’

    For many individuals, the services are not provided as the parents may be told (i) that there is no funding or money for their son or daughter or (ii) that there is a waiting list to obtain services and it may be many years before there is an opening or (iii) that only ‘emergency’ placements are available in those situations where the care providers (parents) die or finally (iv) the parents may be told that their developmentally disabled child is not entitled to services under the law. If any of the above four statements are told to the parents which in effect denies the developmentally disabled child from receiving services ‘with reasonable promptness’ after making application for the services, is in this author’s opinion that this denial is a clear violation of the disabled persons civil rights and the federal courts have the power to grant appropriate relief to that disabled person and order the state agency which failed to authorize funding to pay the attorney fees and costs of the disabled person.

 

Developmental Disability
    Under the law (P.L. 101-496) the term ‘developmental disability’ is defined as follows:

severe, chronic disability of a person 5 years of age or older which: (a) Is attributable to a mental or physical impairment or is a combination of mental and physical impairments; (b) Is manifested before the person attains age twenty-two; (c) Results in substantial functional limitations in three or more of the following areas of major life activity: (i) self care; (ii) receptive and expressed language; (iii) learning; (iv) mobility; (v) self direction; (vi) capacity for independent living; and (vii) economic self sufficiency; and (e) reflects the person’s need for a combination and sequence of special, interdisciplinary or generic care, treatment or other services which are lifelong or extended duration and are individually planned and coordinated; except that such term, when applied to infants and young children (meaning individuals from birth to age 5, inclusive), who have substantial delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided.

 

Medicaid - The Role Of The State And Federal Government
    Medicaid is a jointly-funded state and federal government program that pays for medical care for the medically need. (42 United States Code Section 1396). The ‘developmentally disabled’ are entitled to certain services under the Medicaid Act and theses services are paid with Medicaid funds. Generally, the State government contributes one-half of the program cost and the federal government the other half. The states are given the responsibility to administer the Medicaid program. All ‘developmentally disabled’ are entitled to services under the Medicaid law and services cannot be denied on the basis that there is no money or that there are limits on the number of people that can be served. serve. The states have an unfortunate incentive to deny services to the ‘developmentally disabled’ in that the fewer people who are serviced, the state saves significant sums of money by not funding their one-half of the program cost. (The federal government will only contribute their share of the program cost only after the developmentally disabled begins to receive services.)

    The state’s obligation under the Medicaid Act is not to actually provide the care, but to pay for the cost of the care when the person presents himself or herself for treatment or services. (See Legal Cases: Catanzano by Catanzano v. Wing, 103 F.3d 223, 229-230 (2nd Cir. 1996) and Blue v. Yaretsky, 457 U.S. 991, 1011 (1982).

 

Active Treatment Required Under Medicaid
    ‘Active Treatment’ refers to an aggressive, consistent implementation of a program of specialized and generic training, treatment and health services. Active treatment does not include services to maintain generally independent clients who are able to function with little supervision or in the absence of a continuous active treatment program. (42 Code of Federal Regulations, Section 483.440(c)).

    The law (statutes and regulations) require besides ‘active treatment’ that the developmentally disabled receive services concerning habilitation, occupational therapy, speech therapy and physical therapy.
(See:42 U.S.C. Sec. 1396d(d); 42 C.F.R. Sec. 483.45).

    The active treatment program is directed toward: (i) the acquisition of the behaviors necessary for the client to function with as much self determination and independence as possible; and (ii) the prevention or deceleration of regression or loss of current optimal functional status.
(See: 42 C.F.R. Sec. 483.400(a)(1)(i)-(ii)(1996)).

 

The Components of Active Treatment:
    A. Comprehensive Functional Assessment (42 C.F.R. 483.440(c)(3)). - The individual’s interdisciplinary teat must produce accurate, comprehensive functional assessment data, within 30 days after admission, that identify all of the individuals’s
* Specific developmental strengths, including individual
      preferences;
* Specific functional and adaptive social skills the
      individual needs to acquire;
* Presenting disabilities and when possible their causes;
      and
* Need for services without regard to their availability.
    B. Individual Program Plan (IPP) (42 C.F.R. 483.440(c)). - The interdisciplinary team must prepare an IPP which includes opportunities for individual choice and self management and identifies; the discrete, measurable, criteria based objectives the individual is to achieve; and the specific individualized program of specialized and generic strategies, supports and techniques to be employed. The IPP must be directed toward the acquisition of the behaviors necessary for the individual to function with as much self-determination and independence as possible and the prevention or deceleration of regression or loss of current optimal functional status.
    C. Program Implementation (42 C.F.R. 483.440(d)). - Each individual must receive a continuous active treatment program consisting of needed interventions and services in sufficient intensity and frequency to support the achievement of IPP objectives.
    D. Program Documentation (42 C.F.R. 483.444(e)). - Accurate, systematic, behaviorally stated data about the individual’s performance toward meeting the criteria stated in IPP objectives serves as the basis for necessary change and revision to the program.
    E. Program Monitoring and Change (42 C.F.R. 483.440(f). - At least annually, the comprehensive functional assessment of each individual is reviewed by the interdisciplinary team for its relevancy and updated, as needed. The IPP is revised as appropriate.

 

Services Must Be Provided With Reasonable Promptness To All Eligible Individuals
    The Medicaid Act requires that "[a] State plan for medical assistance must...provide that all individuals wishing to make application for medical assistance under the plan shall have the opportunity to do so, and that such assistance shall be furnished with reasonable promptness to all eligible individuals." 42 U.S.C. 1396a(a)(8) (See also 42 C.F.R. Sect. 435.930(a)-(b); Section 435.911(a); Sect. 435,911(a)(1)-(2); Sect. 435.911(e)(1)).

    A corresponding federal regulation provides that the responsible state agency "must," among other things, "[f]urnish Medicaid promptly to recipients without any delay caused by the agency’s administrative procedures," and "[c]ontinue to furnish Medicaid regularly to all eligible individuals until they are found to be ineligible." 42 C.F.R. Sec. 435.930(a)-(b) (1996). Another regulation states that "[t]he agency must establish time standards for determining eligibility and inform the applicant of what they are." 42 C.F.R. Sec. 435.911(a) (1996). These period are not to exceed "[n]inety days for applicants who apply for Medicaid on the basis of disability" or "[f]orty-five days for all other applicants." 42 C.F.R. Sec. 435.911(a)(1)-)(2) (1996). Moreover, the agency "must not use the time standards" as "a waiting period." 42 C.F.R. Sec. 435.911(e)(1) 1996.

    In Florida, the federal Circuit Court found that it was a violation of the civil rights of the developmentally disabled to be denied services as the Medicaid Act requires the services to be delivered with ‘reasonable promptness.’ Developmentally disabled individuals had been placed on waiting lists for entry into immediate care facilities. The disabled claimed that they were not receiving the therapies, training and other active treatment to which they are entitled by virtue of their eligibility for a residential placement in an intermediate care facility. Most of the disabled had been waiting for over 5 years for Medicaid services and were languishing without the training and therapies they so desperately needed. The Court entered an injunction which required the State of Florida to establish a waiting list time period, not to exceed 90 days, for individuals who were eligible for certain Medicaid services. In other words, services were to be delivered to the developmentally disabled with reasonable promptness, within 90 days after being found to be eligible for services. Inadequate state appropriations do not excuse noncompliance with the Medicaid Act. (See: Doe 1-13 By and Through Doe, Sr. 1-13 v. Chiles, 136 F.3d 709 (11th Cir. 1998)).

 

Requirement That Services Must Be Provided In A Community Setting
    On June 22, 1999, in a landmark decision for the developmentally disabled, the United States Supreme Court in Olmstead v. Zimring, U.S. , 1999 WL 407380 (June 22, 1999) ruled that the Americans with Disabilities Act (ADA) required placements of community settings rather than in institutions when (1) the State’s treatment professionals have determined that community placement is appropriate; (2) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual; and (3) the placement can be reasonably accommodated, taking into account the resources available to the State and the needs of others with mental disabilities. The Court noted that the individuals in the lawsuit were already receiving services under the Medicaid Act, although the services were being rendered in an institution as opposed to a community setting. The State of Georgia argued to the Court that by asking a person to wait a short time until a community placement is available would not be unreasonable under the ADA. The Supreme Court agreed that it would be reasonable for the State to ask someone to wait until a community placement is available so long as the waiting list moved at a reasonable pace. It is very important to recognize in this case that the individuals were receiving services and that the issue before the Court was not the failure of the State to deliver services with reasonable promptness. Additionally, given that Medicaid services are to be provided with ‘reasonable promptness’ to the developmentally disabled, any delay in providing the services (more than 90 days in this author’s opinion) is a violation of that person’s civil rights. (See also Kathleen S. v. Department of Public Welfare of Com., 10 F.Supp.2d 476 (E.D. Pa. 1998) where the developmentally disabled were entitled to receive services in the most integrated setting appropriate to their needs).

 

Conclusion & Unreasonable Waiting Lists For Services Are Unconstitutional
    Given that Medicaid services are to be provided with ‘reasonable promptness’ to the developmentally disabled, there is legal authority that the delay in providing the services (more than 90 days) is a violation of that person’s civil rights. Additionally, the developmentally disabled are entitled to receive services in the most integrated setting appropriate to their needs. Parents need to know their rights under the law so they can be an effective advocate for their child. In most instances, parents had to be assertive to obtain the appropriate services for their child during the school years. Parents will likewise find it necessary to be assertive to obtain the appropriate adult services for their child.

  

III.   Estate Planning for Families with Disabled Persons

    Parents of a disabled child should establish a "Special Needs Trust" to benefit the child. A "Special Needs Trust" allows the parents or anyone to direct money to the trust so that the funds can be used by the trustee(s) to benefit the disabled without making the child ineligible for the receipt of governmental benefits based on need such as Supplemental Security Income (SSI), Medicaid and its medical benefits. Without a "Special Needs Trust" the disabled person may be required to exhaust almost his/her entire inheritance before becoming eligible for government benefits or the funds may be required to be paid over to the government as reimbursement for care and expenses of the disabled person.

    The funds in the "Special Needs Trust" can be used to supplement and not supplant government benefits. The purpose of the "Special Needs Trust" is to avoid the disabled person from being disqualified from receiving government benefits and to maximize financial resources to ultimately provide him/her with the best quality of life due to their disability. It is very important that the attorney who drafts the "Special Needs Trust" has experience in this area and does not draft the typical Trust which many families use in their estate planning.

Author