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The Term Special Health Care Needs or Disability

HRSA/MCHB – Children and Youth with Special Health Care Needs (CYSHCN)

MCHB defines CYSHCN as those who have or are at risk for chronic physical, developmental, behavioral, or emotional conditions who require health and related services of a type or amount beyond that required by CY generally. [McPherson, M., et al. (1998). A New Definition of Children with Special Health Care Needs. Pediatrics. 102(1);137-139. www.pediatrics.org/search.dtl

NOTE: Since MCHB began the Healthy & Ready to Work initiative in 1996, the terminology youth with special health care needs (YSHCN) and children and youth with special health care needs (CYSHCN) has been used.

ADA - Executive Summary: Compliance Manual Section 902, Definition of the Term "Disability"
http://www.eeoc.gov/policy/docs/902sum.html
The definition of "disability" under the ADA reflects Congressional intent to prohibit the specific forms of discrimination that people with disabilities face. Since the definition is tailored to the purpose of eliminating discrimination prohibited by the ADA, it may differ from the definition of "disability" under other statutes. A determination of whether a charging party has a "disability" turns on whether he or she meets the ADA definition of that term. A charging party has a "disability" for purposes of the ADA if she or he (1) has a physical or mental impairment that substantially limits a major life activity, (2) has a record of such an impairment, or (3) is regarded as having such an impairment. A charging party must satisfy at least one of these three parts of the definition to be considered an individual with a "disability." Supreme Court has ruled that the determination of whether a person has an ADA "disability" must take into consideration whether the person is substantially limited in performing a major life activity when using a mitigating measure. This means that if a person has little or no difficulty performing any major life activity because s/he uses a mitigating measure, then that person will not meet the ADA's first definition of "disability." The Supreme Court's rulings were in Sutton v. United Airlines, Inc., 527 U.S. ____ (1999), and Murphy v. United Parcel Service, Inc., 527 U.S. ____ (1999). Following the Supreme Court's ruling, whether a person has an ADA "disability" is determined by taking into account the positive and negative effects of mitigating measures used by the individual.

NATIONAL CENTER ON WORKFORCE AND DISABILITY/ ADULT.
What Do We Mean By the Term “Disability”?
www.onestops.info/article.php?article_id=6&subcat_id=12
One page fact sheet. Disability impacts people’s lives in a wide variety of ways, and the level of impact can range from minimal to extensive. Legal definitions vary considerably. A person may be considered “disabled” under the Americans with Disabilities Act but not by their state’s vocational rehabilitation agency.

DEPARTMENT OF LABOR
How Does The Federal Government Define "Disability"?
www.dol.gov/odep/faqs/federal.htm
One page fact sheet. The definition of "disability" varies depending on the purpose for which it is being used. Federal and state agencies generally use a definition that is specific to a particular program or service.


Federal Definition of Developmental Disability
www.acdd.org/definition.htm
According to the federal definition referenced in P.L. 95-602, the term developmental disability means a severe, chronic disability in an individual five years of age or older that (1) Is attributable to a mental or physical impairment or a combination of mental and physical impairments (2) Is manifested before the person attains age 22 (3) Is likely to continue indefinitely (4) Results in substantial functional limitations in three or more of the following areas of major life activity (a) self-care, (b) receptive and expressive language, (c) learning, mobility, (d) self-direction, capacity for independent living, (e) economic self-sufficiency and (5) Reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, individualized supports, or other forms of assistance that are of lifelong or extended duration and are indivdually planned and coordinated.

DISABILITY RIGHTS PORTALS

A Guide to Disability Rights Laws
www.usdoj.gov/crt/ada/cguide.htm
On-line Document created by the U.S. Department of Justice, Civil Rights Division
Disability Rights Section

  • American with Disabilities Act

  • Telecommunications Act
  • Fair Housing Act
  • Air Carrier Access Act
  • Voting Accessibility for the Elderly and Handicapped Act
  • National Voter Registration Act
  • Civil Rights of Institutionalized Persons Act
  • Individuals with Disabilities Education Act (IDEA)
  • Rehabilitation Act (Sections: 501, 504.508)
  • Architectural Barriers Act
  • Other Sources of Disability Rights Information

NCWD/Youth Disability Legislation Central
www.ncwd-youth.info/resources_&_Publications/disability_Legislation/index.html#content
Check out our new "one stop" source for information on disability legislation. This resource aggregates and categorizes legislation into a single source.

EDUCATION ISSUES

The Power and Scope of Section 504 of the Rehabilitation Act - Using it to Advocate for Your Rights as a Person with a Disability presented by Brian East, August 12, 2002
http://www.ilru.org/html/training/webcasts/handouts/2002/08-12-02/materials.html

Section 504 of the Rehabilitation Act of 1973 – Role of School Nurse
http://www.nasn.org/briefs/2001brief504.htm
Section 504 of the Rehabilitation Act of 1973 (29 U.S.C. Section 794) prohibits discrimination on the basis of disability and requires access to federally funded programs, including public schools, for individuals with disabilities. The definition of disability under this federal law is a physical or mental impairment that substantially limits one or more major life activities. For students who are eligible under this law, accommodations must be made to eliminate barriers to their participation in school and school activities for which they would be eligible if they did not have a disability. Implementation of this law still varies greatly from state to state (Gelfman 2001). This civil rights law supports advocacy for a wide range of students with physical and mental health impairments to assist them in achieving positive health and educational outcomes

504 & ADA - Your Rights Under Section 504 And The Americans With Disabilities Act
www.hhs.gov/ocr/504ada.html
Who Is Protected Under Section 504 and the ADA? Section 504 and the ADA protect qualified individuals with disabilities. An individual with a disability is a person who has a physical or mental impairment that substantially limits one or more major life activities; has a record of such an impairment; or is regarded as having such an impairment. Major life activities means functions such as caring for one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning and working. Under Section 504 and the ADA, a person is a qualified individual with a disability if he or she meets the essential requirements for receipt of services or benefits, or participation in the programs or activities of a covered entity. The question of whether a particular condition is a disability within the meaning of Section 504 and the ADA is determined on a case-by-case basis

EMPLOYMENT & DISABILITY

US Disability Policy, Legislation, Programs
www.ilr.cornell.edu/ped/il/Independence/pol_choice.htm
For anyone interested in a quick tutorial of federal disability policy in the US, Cornell University's Independence project is a good summary of basic programs and initiatives.

Cornell University - Independence: Program on Employment and Disability
www.ilr.cornell.edu/ped/il/Independence/pol_choice.htm
Quick tutorial of federal disability policy in the US, Cornell University's Independence project is a good summary of basic programs and initiatives.

SSA - The Ticket to Work and Self-Sufficiency Program;
Final Regulations - Synopsis

www.ssa.gov/work/ResourcesToolkit/FinalRegs2002.html
The Ticket to Work program provides Social Security disability beneficiaries and disabled or blind Supplemental Security Income beneficiaries with expanded access to employment services, vocational rehabilitation services, or other support services. This program will enable these beneficiaries to obtain, regain or maintain employment and to reduce their dependency on cash assistance. Under this program, SSA will pay the providers of those services, called employment networks (ENs), after the beneficiaries achieve certain levels of work and earnings. Complete text of these final rules, www.ssa.gov/regulations/rin0960_af11f.htm

EQUAL OPPORTUNITY & ACCESS

The Rehabilitation Act of 1973
www.ilr.cornell.edu/ped/daa/rehab.html
Cornell University – School of Industrial and Labor Relations.
The Rehabilitation Act prohibits discrimination on the basis of disability in programs conducted by Federal agencies, in programs receiving Federal financial assistance, in Federal employment and in the employment practices of Federal contractors. The standards for determining employment discrimination under the Rehabilitation Act are the same as those used in title I of the Americans with Disabilities Act.

CEC - CD on Understanding IDEA, 504, 508, ADA
www.cec.sped.org
Council for Exceptional Children (CEC) - The new IDEA CD 2002 offers information on IDEA '97, No Child Left Behind Act, Head Start regulations, sections 504-508 of the Rehabilitation Act, the American with Disabilities Act and other related topics. There are 21 special education topics that include materials published and developed by OSEP, links, and contact information. This CD is user-friendly and contains many resources available to download. There is also a "Trainer Tips" section that is useful for professional development providers and university faculty.

Section 508 -
Center for Information Technology Accommodation (CITA), U.S. General Services Administration's Office of Government-wide Policy

www.section508.gov/
In 1998, Congress amended the Rehabilitation Act to require Federal agencies to make their electronic and information technology accessible to people with disabilities. Inaccessible technology interferes with an individual's ability to obtain and use information quickly and easily. Section 508 was enacted to eliminate barriers in information technology, to make available new opportunities for people with disabilities, and to encourage development of technologies that will help achieve these goals. The law applies to all Federal agencies when they develop, procure, maintain, or use electronic and information technology. Under Section 508 (29 U.S.C. ‘ 794d), agencies must give disabled employees and members of the public access to information that is comparable to the access available to others. Using this web site, Federal employees and the public can access resources for understanding and implementing the requirements of Section 508.

Americans with Disabilities Act (ADA) Titles I and V
www.eeoc.gov/facts/qanda.html
The term ``disability'' means, with respect to an individual- (A) a physical or mental impairment that substantially limits one or more of the major life activities of such individual;

Individual with a Disability

  An individual with a disability under the ADA is a person who has a physical or mental impairment that substantially limits one or more major life activities, has a record of such an impairment, or is regarded as having such an impairment. Major life activities are activities that an average person can perform with little or no difficulty such as walking, breathing, seeing, hearing, speaking, learning, and working.

FAMILY MEDICAL LEAVE ACT

DOL - Family Medical Leave Act (FMLA)
www.dol.gov/esa/whd/fmla/
The federal law that allows a family member to take unpaid leave from their place of employment to care for an immediate family member (parent, spouse, and child) in certain circumstances. U.S. Department of Labor site contains everything about the FMLA including the federal law, who is eligible to take the leave, and many frequently asked questions (FAQ's).

HRSA/MCHB - TITLE V LEGISLATION

HRSA/MCHB - Understanding Title V of the Social Security Act
ftp://ftp.hrsa.gov/mchb/titlevtoday/UnderstandingTitleV.pdf
History and overview of the Title V legislation and CSHCN services overseen by the Maternal and Child Health Bureau and provided by state programs.


" What is Title V and How Can it Help You?"
internet.dscc.uic.edu/dsccroot/titlev.asp
Every state and the District of Columbia has a Title V Program for Children with Special Health Care Needs (CSHCN) that is funded, in part, through the Federal Title V Maternal and Child Health Block Grant. These programs began in 1935, when Congress passed the Social Security Act, a law designed to bring some financial and health security into the lives of America's most vulnerable citizens. The fifth article of that act, known as Title V (five), provided funds to states to develop and operate public health care programs for certain children with special health care needs as well as to establish other programs to promote the health of low income mothers and children

OBRA ’85 – Omnibus Budget Reconciliation Act of 1985
Children with Special Health Care Needs (CSHCN)

www.sph.unc.edu/toolbox/tech_support/TitleV.pdf
The Consolidated Omnibus Budget Reconciliation Act of 1985 which amended Title V of the Social Security Act changed the terminology from crippled children to children with special health care needs (CSHCN).

OBRA ’89 - Omnibus Budget Reconciliation Act of 1989 - Social Security Act §501
www.ssa.gov/OP_Home/ssact/title05/0501.htm
SEC. 501. [42 U.S.C. 701] (a) (C) (D) (2) [ 673 (3)]
All states are mandated by Amendments to Title V of the 1935 Social Security Act in the Omnibus Budget and Reconciliation Act of 1989 (OBRA '89) to "provide and to promote family-centered, community-based, culturally-competent, coordinated care for children with special health care needs." The term "care coordination services" means services to promote the effective and efficient organization and utilization of resources to assure access to necessary comprehensive services for children with special health care needs and their families.

HEALTH INSURANCE BENEFITS

OFFICE FOR CIVIL RIGHTS - HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT OF 1996 (HIPAA)
Medical Privacy - National Standards to Protect the Privacy of Personal Health Information

www.hhs.gov/ocr/hipaa/

PROTECTING THE PRIVACY OF PATIENTS' HEALTH INFORMATION

Overview: The first-ever federal privacy standards to protect patients' medical records and other health information provided to health plans, doctors, hospitals and other health care providers took effect on April 14, 2003. Developed by the Department of Health and Human Services (HHS), these new standards provide patients with access to their medical records and more control over how their personal health information is used and disclosed. They represent a uniform, federal floor of privacy protections for consumers across the country. State laws providing additional protections to consumers are not affected by this new rule. Site provides numerous tools and fact sheets and includes answers to hundreds of common questions about the rule, as well as explanations and descriptions about key elements of the rule.

DOL - Health Insurance Portability and Accountability Act (HIPAA)
http://www.dol.gov/dol/topic/health-plans/portability.htm
Information on HIPAA, a law that provides protections that improve the portability and continuity of health insurance coverage and requires that most health plans provide coverage for pre-existing medical conditions after 12 months.

COBRA – General Explanation
www.cobrainsurance.com/COBRA_Legal_Text.htm
This site provides a general explanation of COBRA requirements. Detailed subject based outline covers the rules that apply to health plans for employees in the private sector and consumers rights to benefits under this law.

Consolidated Omnibus Budget Reconciliation Act of 1985, which among other things established the health care continuation requirements that are found in ERISA, the Code and the PHSA. COBRA requires that if an employee or other “qualified beneficiary” loses employer-provided health coverage due to termination of employment or another specified triggering event, the group health plan must offer continued health care coverage to the qualified beneficiary. The qualified beneficiary may be required to pay the full cost for the coverage. This ‘COBRA Coverage” has limited duration. In most cases, the maximum COBRA period is 18 or 36 months from the date of the qualifying event.

COBRA – CONSOLIDATED OMNIBUS BUDGET RECONCILIATION ACT OF 1985
Health Plan for Individuals and Small Businesses
www.cobrahealth.com/
This site contains over 5000 pages of info, questions and answers including actual text of legislation.

COBRA – Insurance Definitions
www.cobrahealth.com/insurancedefinitions.html

SSA – MEDICAID
Title XIX of the Social Security Act establishes the Medicaid program.

www.ssa.gov/OP_Home/ssact/title19/1900.htm
Title XIX of the Social Security Act establishes the Medicaid program. Medicaid is the nation's major public financing program for providing health and long-term services and supports to low-income persons. Medicaid is a means-tested entitlement program financed by the state and Federal government out of general revenues.

SSI/SSDI

SSA – Rules, Regulations that Pertain to SSA, SSI, SSDI issues.
www.ssa.gov/regulations/index.htm

OBRA '89- SEC. 1615 - Rehabilitation Services For Blind And Disabled Individuals
www.ssa.gov/OP_Home/ssact/title16b/1615.htm#c
SEC. 1615. [42 U.S.C. 1382d] (a) In the case of any blind or disabled individual who—

(1) has not attained age 16; and
(2) with respect to whom benefits are paid under this title Social Security is authorized to reimburse the State agency administering or supervising the administration of a State plan for vocational rehabilitation services approved under title I of the Rehabilitation Act of 1973 for the costs incurred under such plan in the provision of rehabilitation services to individuals who are referred for such services pursuant to subsection (a) (1), in cases where the furnishing of such services results in the performance by such individuals of substantial gainful activity for a continuous period of nine months.

 

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The HRTW Center is headquartered at the Maine State Title V CSHN Program. Activities are coordinated through the Maine Support Network's Center for Self-Determination, Health and Policy. The Center is funded through a cooperative agreement (U39MC06899-01-00) from the Integrated Services Branch, Division of Services for Children with Special Health Care Needs (DSCSHN) in the Federal Maternal and Child Health Bureau (MCHB), Health Resources and Service Administration (HRSA), Department of Health and Human Services (DHHS).
Lynda Honberg, HRSA/MCHB Project Officer.