Special Needs Resources

A Family Handbook on Future Planning is a guide to help families develop a future plan for their sons or daughters with cognitive, intellectual or developmental disabilities that provides personal, financial and legal protections for these individuals after the parents either die or can no longer provide care or support.

A Family Handbook on Future Planning

Sharon Davis, Editor

December 2003

The Arc of the United States and Rehabilitation Research and Training Center on Aging with Intellectual and Developmental Disabilities Department of Disability and Human Development College of Applied Health Sciences University of Illinois at Chicago

A Family Handbook on Future Planning is not designed to be a "do-it-yourself" guide towill writing, trust development and other legal processes. Instead, it is designed to help families review and inventory the needs and strengths of their family member, determine what should be in a plan and then locate qualified professionals and resources to finalize the plan.

This publication is an update of A Family Handbook on Future Planning published by The Arc in 1991. It incorporates and updates additional information covered in How to Provide for Their Future which was published by The Arc in 1989 and is now out-of-print. This new version is intended for publication on the World Wide Web, as most of the resources it cites are found on the Web.

With Open Arms Workbook:

Embracing a Bright Financial Future for You and Your Child with Disabilities and Other Special Needs

In the years immediately following a diagnosis, parents of children with disabilities struggle not only with caring for theirs special needs, but also with realigning their expectations and dreams. What will their child’s education look like? Will their child be independent? Will their child need financial support for the rest of his or her life? If so, how can parents save enough for retirement AND a child’s lifetime of care?

NICHCY Estate Planning Booklet

 This issue of NEWS DIGEST focuses on one very important and often complicated issue that parents confront when they have a son or daughter with any type of disability: How to plan their estate to best provide for their child’s future security. Parents may ask themselves: "What will our son or daughter do when we are no longer here to provide help when it’s needed? Where — and how — will our child live? Will he or she have enough money to sustain a decent quality of life?"

In offering every assistance possible to aid you in caring for your special need child, we have added several links for you to utilize.  Please note that we are always interested in adding resource links to help our clients.  Feel free to e-mail me with any suggestions.

 Traumatic Brain Injury 
A traumatic brain injury can change a life.  So can the act of support.  Missouri Support Partner Program

NAPAS
Our mission is to protect the rights of individuals with disabilities by providing advocacy and legal services.

MSHA
MSHA serves as the state association representing speech-language pathologists, audiologists, speech, language, and hearing scientists and related personnel associated with organized speech, language, and hearing education and health-care settings.  More specifically, to provide leadership, to perform membership services, to advocate rights of people with communication disorders, and to serve as the catalyst for practice innovation toward enabling members to better serve public interest and the profession.

CHADD
Specifically, CHADD works to improve the lives of people affected by AD/HD through:
Collaborative Leadership
Advocacy
Research
Education and
Support

CEC
The Council for Exceptional Children (CEC) is the largest international professional organization dedicated to improving educational outcomes for individuals with exceptionalities, students with disabilities, and/or the gifted. CEC advocates for appropriate governmental policies, sets professional standards, provides continual professional development, advocates for newly and historically underserved individuals with exceptionalities, and helps professionals obtain conditions and resources necessary for effective professional practice.

Division of Career Education
The Vocational Special Needs Section’s overall responsibility/mission is to assure that individuals with disabilities and other Missouri special populations are provided quality support programs and/or services so they may succeed in vocational education. 

SIG
The mission of the Society for Technical Communication's Special Needs SIG (SN SIG) is threefold: (1) provide resources, information, and support to technical communicators with special needs; (2) provide resources that will help technical communicators make the products they create accessible to end users with special needs; (3) provide strategic leadership in both areas through positive initiatives and open communication, both inside and outside of the Society.

SRC
The SRC serves a population throughout Southeast Missouri as part of the Missouri Division of Mental Retardation and Developmental Disabilities (MRDD) of the Missouri Department of Mental Health.

Special Health Care Needs
Our mission is to help Missouri's parents provide safe, healthy and nurturing environments for their children. 

MOPTA
The mission of the National PTA is three-fold:
To support and speak on behalf of children and youth in the schools, in the community and before governmental bodies and other organizations that make decisions affecting children;
To assist parents in developing the skills they need to raise and protect their children;
To encourage parent and public involvement in the public schools of this nation.

CISE
CISE offers a variety of training opportunities, publications, and library resources and materials on disabilities. Awareness about specific disabilities, characteristics that impact learning, and specific strategies are just some of the topics about which you will find information. From this section, you can also link to other state and national resources on disabilities.

Center for Developmental Disabilities
The Special Needs Child Care Task Force will promote and enhance the development of programs and systems throughout the state which support:
Providers in offering quality, inclusive early care and education for children with special needs.
Parents in advocating for accessing quality care and education.

NAMI
The Alliance for the Mentally Ill - NAMI St. Louis - is a leader in providing services to those who care for - and about - people with mental illness. Through its extensive array of support and educational programs, informational resources and advocacy activities, NAMI St. Louis works to fulfill its mission to improve the quality of life for people recovering from severe mental illness.

Family Support Services
“Family Support Services provides quality educational, recreational and respite supports and services which promote inclusion in all aspects of life for people with developmental disabilities and their families."

DDRB
The Developmental Disabilities Resource Board of St. Charles County
Our mission is to ensure that individuals with developmental disabilities have quality opportunities and choices to be fully included in society.

MUMS
MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare or not so rare disorder, chromosomal abnormality or health condition.
MUMS' main purpose is to provide support to parents in the form of a networking system that matches them with other parents whose children have the same or similar condition.
Through a database of over 18,000 families from 54 countries covering over 3500 disorders, very rare syndromes or conditions can be matched.
Parents can then exchange valuable medical information, as well as, the names of doctors, clinics and medical resources or research programs.
Families provide each other with emotional support and they don't have to feel so alone when they have each other to reach out to in time of need.
MUMS networks with other organizations which do matching, thus expanding the possibilities of finding a match.
MUMS also connects parents with support groups dealing with their child's specific disability or assists them in forming a group.

MO FEAT
St. Charles County, Missouri
List of services, supports, and contacts for parents of children with Autism

MODDRC
Missouri Developmental Disabilities Resource Center

Charge Syndrome
CHARGE Syndrome - Choanal Atresia, Posterior Coloboma, Heart defect, choanal Atresia, Retardation, Genital and Ear anomalies.
CHARGE Syndrome refers to children with a specific set of birth defects. "CHARGE" originally came from the first letter of some of the most common features seen in these children: C = coloboma, H = heart defects, A = atresia of the choanae, R = retardation of growth and development, G = genital and urinary abnormalities, E = ear abnormalities and/or hearing loss. The diagnosis of CHARGE is based on finding several of these and possibly other features in a child.

ANA
The Acoustic Neuroma Association provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves. Patient founded in 1981, ANA is an incorporated, non-profit organization, recognized as such by the IRS, and is supported by contributions from its members. The association also furnishes information on patient rehabilitation to physicians and health care personnel, promotes research on acoustic neuroma, and educates the public regarding symptoms suggestive of acoustic neuroma, thus promoting early diagnosis and successful treatment.  

ATAXIA St. Louis
 The St. Louis Metro Ataxia Support Group consists of people with ataxia, their families, caregivers, and others who have direct interest in providing support to people with Ataxia.  We are here to provide advice and support for each other.  In our meetings we discuss recent medical studies, alternative methods in dealing with symptoms, the progression of the ataxia and much, much more.  We share ideas on what works and what does not work in dealing with Ataxia on an everyday basis.  We arrange for guest speakers on subjects of interest whenever possible. 

GO ARC
Mission Statement
"To Support Individuals With Disabilities in Directing Their Own Lives as Valued Members of the Community."

GLARRC
GLARRC works with the State Special Education Agencies of the following states: Illinois | Indiana | Iowa | Michigan | Minnesota | Missouri | Ohio | Pennsylvania | Wisconsin as the states seek ways to improve their provision of quality education and related services to infants, toddlers, children and youth with disabilities and their families.

MOAHEAD
Missouri AHEAD Guidebook
This book has been written to help students with disabilities achieve access into postsecondary education institutions and find success once they are enrolled. It was also written to help postsecondary institutions establish connections with secondary schools in order to recruit qualified students with disabilities into programs. The guide should also be helpful to secondary special education teachers and parents of students with disabilities.

Child Care Connection MO
We are the child care resource and referral agency for central Missouri. ChildCare Connection has lots of helpful information for childcare providers, families with young children, and anyone else who is interested in childcare. 

University of Missouri-Columbia Library Resource
 INFORMATION FOR PATIENTS & HEALTH CONSUMERS

NICHY
We are the center that provides information to the nation on:
disabilities in children and youth;
programs and services for infants, children, and youth with disabilities;
IDEA, the nation's special education law;
No Child Left Behind, the nation's general education law; and
research-based information on effective practices for children with disabilities.

The agency has developed various programs to provide a wide array of services to families and individuals diagnosed as having a developmental disability.  Serving the Madison county area

William M. BeDell ARC

Featured Links Listed below are links to web sites that may be of interest to you. Feel free to visit these web sites.

72(t) Distribution Information from the IRS - IRS web site containing the new rules that may be used for calculating substantially equal periodic payments under section 72(t). 72(t) Distributions from IRA accounts - The IRS Rule 72(t) allows for penalty free, early withdrawals from retirement accounts. This allows you to begin receiving money from your retirement accounts before you turn age 59 1/2 without the normal 10% penalty. Use this calculator to determine your allowable 72(t) Distribution and how it can help fund your early retirement. A.M. Best Company - The leading provider of ratings, news, data and financial information for the global insurance industry. Alzheimer's Assocation - The Alzheimer's Association is the world leader in Alzheimer research and support. American College - Bryn Mawr, PA - The leader in financial services education. Applying for Financial Aid - Expected Family Contribution (EFC) Calculator. Button Generator - Webmaster tools. Center for Disease Control - Traveler's Health - Health information on specific destinations. What to know before you go. Code Amber - The Web's Amber Alert System - In April, 2003, President Bush signed the Amber Alert legislation making it a national program. The AMBER Plan is a voluntary partnership between law-enforcement agencies and broadcasters to activate an urgent bulletin in the most serious child-abduction cases. College for Financial Planning - The oldest and most widely respected provider of financial planning education in the United States. Corporation for Long Term Care Certification Debt Relief for Active Military Personnel - Any member of the Uniformed Services serving on active duty is covered under the Soldiers' and Sailors' Relief Act of 1940. 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Harley Gordon - Harley Gordon's appearance on The Dolans Unscripted on CNNfn. Harley discusses Long Term Care insurance protection and its role if you live a long life, get sick, and need care. Harley Gordon is the President of CLTCC (Corporation for Long Term Care Certification). HealthLinks - A better life through healthy living. Help Your Child Succeed with KidsGoals.com HUD/FHA Refunds - If you had a Department of Housing and Urban Development (HUD)/Federal Housing Administration (FHA) insured mortgage, you may be eligible for a refund of part of your insurance premium or a share of any excess earnings from the FHA's Mutual Mortgage Insurance Fund. Int'l Ass'n. of Registered Financial Consultants - The RFC designation assures the public an advisor has, and will continue to maintain, the ability to serve in a professional, competent manner. Kids and Money Kids Health - From the medical experts of The Nemours Foundation and the A.I. duPont Hospital for Children. KidsGoals.com L3xicon - Search Engine LookSeek Search Engine Mature Market Institute - MetLife - The Mature Market Institute is the company’s information and policy resource center on issues related to aging, long-term care, retirement, and the 50+ marketplace. The Institute, staffed by gerontologists, provides research, training and education, consultation and information to support MetLife, its corporate customers and business partners. Mensa - Mensa provides a forum for intellectual exchange among members. Its activities include the exchange of ideas by lectures, discussions, journals, special-interest groups, and local, regional, national, and international gatherings; the investigations of members' opinions and attitudes; and assistance to researchers, inside and outside Mensa, in projects dealing with intelligence or Mensa. MetDESK® - MetLife's Division of Estate Planning for Special Kids MetLife MetLife - Life Advice® - Decision support information from the MetLife Consumer Education Center and a host of experts on nearly 100 life events, created to help you build your financial freedom. MetLife Bank - View current money market and CD interest rates from MetLife Bank. MetLife Disability Insurance Calculator - Your ability to earn a living is one of your greatest assets. MetLife provides a calculator to calculate the amount of disability income insurance protection you should have. MetLife Is Easier - Insurance need calculators. MetLife Life Insurance Calculator - If you're like most people, you may be surprised by the amount of life insurance coverage you may need based on your current situation. Life moves fast--sometimes we forget how quickly our needs can change. That's why we hope you take the time to complete our life insurance calculator. It will help you determine the appropriate amount of life insurance you may need to provide adequate financial protection for your family. MetLife Your Life - Online magazine from MetLife Auto and Home Insurance Company containing safety information and articles. Million Dollar Round Table MSNBC News National Child Safety - The ChildProof™ Identification Kit offers you the ability to not only fingerprint your child in the comfort and safety of your own home, but to store all your child’s vital information in one safe place. If your child does go missing, it’s important to act quickly to spread the word—and having a child’s vital information all in one place comes in handy—especially for quick disbursement to the police and media. National Do Not Call Registry National Institute on Aging National Long Term Care Ombudsman Resource Center NCCNHR - National Citizens Coalition for Nursing Home Reform Saving for College Savings Bond Wizard - The Savings Bond Wizard ® helps you manage your savings bond inventory on your PC. It's a downloadable program that allows you to maintain an inventory of your bonds and determine the current redemption value, earned interest, and other information. You can also print your bond inventory, providing you with an important record if you ever need to replace any of your savings bonds. SearchMom Directory - Web site links, resources, etc. by state. Snoopy, Charlie Brown & Friends - The official Peanuts website. Social Security Administration - To request a Social Security Statement via the internet or download a request form (SSA-7004). Society of Certified Senior Advisors - An educational organization that provides in-depth training on senior issues to professionals who work with seniors. The society was founded in 1996 by a group of forward-thinking geriatric MD's, gerontologists, elder law attorneys, CPA's, financial planners and other qualified professionals Students.gov - Your comprehensive information portal providing answers to your questions on education, career, government, finding student loans and more. The US Senate Special Commission on Aging - Baby boomer links, LTC links, family caregiver information. TinyUrl.com - Are you sick of posting URLs in emails only to have it break when sent causing the recipient to have to cut and paste it back together? By entering in a URL in this website, they will create a tiny URL that will not break in email postings and never expires. Toastmasters International - Toastmasters is one of the best ways to improve your communication skills. Lose your fears of public speaking and learn skills that will help you be more successful in whatever path you've chosen in life. Wall Street Journal Online WebMD - Medical, health, and wellness information online. Yahoo! - Search engine. Yahoo! Weather - Newark, DE Yahooligans - The web guide for kids.

Because the content of newsgroups and websites changes constantly, it is impossible for us to review it all. Our Agency and MetLife are not responsible for the content of any of the above links. Please note the information being provided is strictly a courtesy. When you choose this link, you are leaving this site. MetLife® makes no representation as to the completeness or accuracy of any information provided at these sites. Nor is the Company liable for any direct or indirect technical or system issues or any consequences arising out of the access to or the use of a third-party site. When you access one of these sites, you are leaving this MetLife® approved website and assume total responsibility and risk for your use of the site to which you link.

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