www.childrensnational. org/DepartmentsandPrograms/default.aspx?Id Alexander Graham Bell Association for the Deaf and Hard of Hearing, 3417 Volta Place, NW, Washington, DC 20007, 202-337-5220, TTY-202-37-5221, info@agbell.org, www.agbell.org American Association on Intellectual and Developmental Disabilities, 444 North Capitol Street, NW, Suite 846, Washington, DC 20001-1512, 800-424-3688, www.aaidd.org AAIDD promotes progressive policies, sound research, effective practices and universal human rights for people with intellectual and developmental disabilities. Advocates for Justice and Education, Inc. 2041 Martin Luther King Jr. Ave. SE, Ste. 400 Washington, DC 20020, 202-678-8060, www.aje-dc.org The mission of Advocates for Justice and Education (AJE) is to educate parents, youth, and the community about the laws governing public education, specifically for children with special needs. We seek to empower youth and parents to be effective advocates and youth to self advocate to ensure that children receive an appropriate education. It is also our mission to make the public aware of the consequences of institutional negligence of children with or without disabilities and to promote school accountability. Prevention of Blindness Society of Metropolitan Washington 1775 Church Street, NW, Washington, DC 20036, 202-234-1010, www.youreyes.org This site provides comprehensive information on vision problems, correction and eyeglasses as well as age- related macular degeneration (AMD), glaucoma, diabetic retinopathy, and a directory of professional members. The site also has a newsletter and support group information. The group works with adults and children. American Association of People with Disabilities, 1819 H Street NW Suite 330, Washington, DC, 2006, 800-840-8844, www.aapd-dc.org AAPD is the largest national nonprofit cross-disability member organization in the United States, dedicated to ensuring economic self-sufficiency and political empowerment for the more than 50 million Americans with disabilities. AAPD works in coalition with other disability organizations for the full implementation and enforcement of disability nondiscrimination laws, particularly the Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973. The Arc of the District of Columbia, THE ARC, 1901 Mississippi Avenue, SE, Washington, DC 20020, 202-889-5901,www.thearcdc.org Affiliate of the National ARC, provides care facilities for children with and without developmental disabilities. Autism Society of America District of Columbia Chapter, 5167 7th St, NE, Washington DC 20011, 202-561-5300, dc-washington@autismsocietyofamerica.org www.autism-society.org/chapter130 The DC Chapter of the Autism Society of America provides: Information and referral services Information sources for current treatment options and national trends in research A local support group. Continual involvement in advocacy with governmental agencies and the legislature. The opportunity to network with people who have common interests and concerns. Support for a summer camp program for children and adults with autism. Bazelon Center for Mental Health Law, 1101 15th Street, NW, Suite 1212, Washington, DC 20005, 202-467-5730, www.bazelon.org For three decades, the Judge David L. Bazelon Center for Mental Health Law has been the nation's leading legal advocate for people with mental disabilities. Our precedent- setting litigation has outlawed institutional abuse and won protections against arbitrary confinement. In the courts and in Congress, our advocacy has opened up public schools, workplaces, housing and other opportunities for people with mental disabilities to participate in community life. Cystic Fibrosis Foundation Metropolitan Washington, D.C. Chapter 6917 Arlington Road, Suite 308, Bethesda, MD, 20814, 301-657-8444, www.cff.org The mission of the Cystic Fibrosis Foundation, a nonprofit donor-supported organization, is to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The Foundation is the leading organization in the United States devoted to cystic fibrosis. It has more than 80 chapters and branch offices nationwide and funds and accredits 115 CF care centers across the country, including 94 adult care programs, which provide patients and families with vital treatment and other CF resources. In addition, 54 affiliate programs provide multi-disciplinary care for CF with Foundation support. The Foundation is one of the most efficient organizations of its kind. In 2006, nearly 90% of every dollar of revenue raised was available for investment in CF research, care and education programs. The National Institutes of Health and many prominent publications, including Forbes and USAToday, have heralded our innovative business model, which fuels drug discovery and development programs. D.C. Down Syndrome Association, 5402 8th St. NE, Washington, D.C. 20011, 202-462-3375, www.ndss.org The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to realize their life aspirations. NDSS is committed to being the national leader in enhancing the quality of life, and realizing the potential of all people with Down syndrome. Easter Seals Child Development Center, 2800 13th Street, NW Washington, DC 20009, 202-387- 4434, gwbr.easterseals.com Easter Seals Child Development Centers provide early education and full-day child care for children with and without disabilities, ages six weeks through five years. Our staff are specially trained to work with children with a wide range of disabilities and developmental delays, helping children of all abilities work toward their developmental goals at a time in their lives when they are most ready to learn. Easter Seals Child Development Centers practice inclusion, placing children with and without disabilities in the same classrooms and activities. These settings enable children with disabilities to learn and grow by imitating the actions of their nondisabled peers. Children without disabilities learn at an early age to understand, respect and accept differences. Epilepsy Foundation Metropolitan Washington, 8301 Professional Place – East, Landover, Maryland 20785, 301- 918-2117 or 301- 459-3700, www.epilepsyfoundation.org/local/MetropolitanWashington Health Services for Children with Special Needs, Inc., 1731 Bunker Hill Road, NE, Washington, DC 20017, 202-466-8483, www.hscsn-net.org Health Services for Children with Special Needs, Inc. (HSCSN/NET) is an innovative care management network coordinating health, social, and education services for the pediatric Supplemental Security Income (SSI) and SSI- eligible populations of Washington, DC. Benefits to members and their families include traditional Medicaid benefits plus expanded health care services including individualized care management; 24-hour access to care coordination; outreach services; respite care; medically necessary home modifications; and mental, behavioral, and developmental wraparound services. Lt. Joseph P. Kennedy Institute, Maryland Department of Health & Mental Hygiene, Developmental Disabilities Administration, 801 Buchanan Street, NE, Washington, DC 20017, 202-529-7600 ext 203, www.dhmh.state.md.us The Developmental Disabilities Administration provides a coordinated service delivery system so that individuals with developmental disabilities receive appropriate services oriented toward the goal of integration into the community. These services are provided through a combination of four state residential centers (providing services to individuals with mental retardation) and a wide array of community based services delivered primarily through a network of non-profit providers. Learning Disabilities Association of Washington, D.C. 1848 Columbia Road, NW, #45, Washington, DC 20009, 202- 265-8869; 410- 396-0518, e-mail: LDAofDC@gmail. com, www.ldanatl.org LDA's mission is to create opportunities for success for all individuals affected by learning disabilities and to reduce the incidence of learning disabilities in future generations. NAMI DC, 422 8th St SE, 2nd Floor, Washington, DC 20003-2832, 202-546-0646, namidc@juno.com, www.nami.org/about/namidc/ Established in 1978 as D.C. Threshold, NAMI-DC has been serving the families of persons with mental illness in the nation's capital for over a quarter century. Our education, support and advocacy efforts include offering information on mental illnesses, family support groups in English and Spanish, and consumer support groups. We aim not only to assist families in times of acute crisis, but also to accompany consumers and families through all the cycles of recovery. National Multiple Sclerosis Society - National Capital Chapter 1800 M Street N.W., Suite 750 South, Washington, D.C. 20036 202-296-5363, www.msandyou.org The National Capital Chapter of the National Multiple Sclerosis Society is committed to providing comprehensive support services to help people with MS and their families better cope with the consequences of the disease. The National Capital Chapter provides programs and services to people in the District of Columbia, Prince George's and Montgomery Counties in Maryland, and Alexandria, Arlington, Fairfax, Fauquier, Loudoun, and Prince William Counties in Virginia. Quality Trust for Individuals with Disabilities 5335 Wisconsin Ave, NW, Ste. #825, Washington, DC 20015, 202-448-1450, www.dcqualitytrust.org Quality Trust for Individuals with Disabilities, Inc (Quality Trust) was created in 2001 to be a durable, independent, advocacy organization. Our role is to advance the individual and collective interests of people with developmental disabilities in the District of Columbia (DC). We address issues of quality in supports and services and advocate for improvement in community and governments systems through a variety of activities. Quality Trust's three core activities on behalf of people with developmental disabilities in DC include * providing lay advocacy services * monitoring the quality and adequacy of services * ensuring access to legal services Spina Bifida Association, 4590 MacArthur Boulevard, NW, Washington , DC 20007, 202-944-3285, Toll Free: 800-621-3141, www.spinabifidaassociation.org The Spina Bifida Association (SBA) serves adults and children who live with the challenges of Spina Bifida. Since 1973, SBA has been the only national voluntary health agency solely dedicated to enhancing the lives of those with Spina Bifida and those whose lives are touched by this challenging birth defect. Its tools are education, advocacy, research, and service. Through its network of chapters, SBA has a presence in more than 125 communities nationwide and touches thousands of people each year. Lives are changed by the programs SBA has created, the services the organization provides, and the accomplishments of its advocacy efforts. Tourette Syndrome Association of Greater Washington (TSAGW), 33 University Boulevard, E., Silver Spring, MD 20901-2485, 301-681-4133, 877-295-2148 (Toll free), www.tsagw.org The Tourette Syndrome Association of Greater Washington (TSAGW) is dedicated to serving the needs of families and individuals dealing with Tourette Syndrome, and the professionals who serve them, in the Maryland, Virginia, West Virginia, and Washington, D.C area. United Cerebral Palsy of Washington, DC & Northern Virginia, 1818 New York Avenue, NE, #101, Washington, DC 20002, www.ucpdc.org UCP affiliates provide support groups for consumers and their family members and friends, share important information and services across the developmental disability community, and advocate for improved services. University Legal Services for the District of Columbia, www.uls-dc.org University Legal Services – Northeast Office Housing Counseling Program, 220 I Street, N.E., Suite 130 Washington, D.C. 20002, 202-547-4747 University Legal Services – Southeast Office 3220 Pennsylvania Avenue, S.E., Suite 300 Washington, D.C. 20020 202- 645-7175 Telephone University Legal Services is a private, non-profit organization that serves as the District of Columbia's federally mandated protection and advocacy system for the human, legal and service rights of people with disabilities. Services provided by ULS under the protection and advocacy grants include information and referral; education and training; investigation of reported or suspected instances of abuse or neglect; legal counsel; technical assistance, and litigation services; and technical assistance regarding legislative and policy concerns. All services are offered free of charge to eligible individuals in accordance with ULS' available resources and policies. ULS' staff includes professional advocates and attorneys Washington Very Special Arts Connection, 1100 16th Street NW, Washington, D.C., 20036, 202-296- 9100, www.vsarts.org WVSA arts connection is a unique and dynamic nonprofit organization serving Washington, D.C. area children and young people with special needs, helping them achieve success for nearly 25 years. Employing the arts as an innovative method of education, WVSA arts connection serves youth with special needs through service-oriented programs using the arts as a tool to master educational, vocational, and other life skills. Our goal is to provide programs for individuals who battle substantial risk factors that may inhibit their potential. Family Voices of D.C., Doreen Hodges, 202- 230-820, kingtitusmom@yahoo.com Family Voices is represented in every state, as well as Washington, D.C., Puerto Rico, and the Virgin Islands, by 1 or 2 Network Members, either appointed or in the case of Chapters, as selected Chapter Representatives. Many state organizations are volunteer while some are able to operate on a funded basis, generally through grants directly to their state Family Voices organization or to an associated organization. All Network Members are involved in efforts to improve the healthcare for children and youth with special health care needs. Family Voices aims to achieve family-centered care for all children and youth with special health care needs and/or disabilities. Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care. Maedi Tanham Carney, CFP M&L Special Needs Planning, LLC 5603 Potomac Avenue NW Washington DC 20016 work(202)841-8362 fax (202)248-7635 www.specialneedsplanning.net A passion to help. The knowledge and experience to deliver. M&L Special Needs Planning, LLC consists of certified financial planners (CFP®) who understand the specifics of the special needs family. Maedi Tanham Carney, CFP®, owner of the company and a certified financial planner, has a special needs child and can empathize with the struggles and joys of this very specific roadmap. We help you look beyond your daily life and help you plan for the financial well being of the entire family in addition to the special needs child. Our past experiences, personal knowledge, and professional expertise have enabled us to make a difference in the financial needs of many families. Following is a description of our workshops to educate the families on the importance of proper planning, In addition, there is an overview of our services. We look forward to helping your family. Please take a look at our website www.specialneedsplanning.net. LIST OF WORKSHOPS, DESCRIPTIONS & COSTS Navigating the Financial World of the Special Needs Family (the complete overview of the special needs journey) This workshop is an overview of the journey of the special needs family. Specifically we discuss the special needs financial planning timeline pointing out and explaining the key pressure points for the special needs child. We discuss how the special needs family inevitably must plan for two generations. When discussing the timeline we give definitions to the special needs language at the specific pressure points. In addition, we discuss the special needs planning pyramid – traditional vs. special needs planning. Specifically, the differences for a special needs family in the areas of risk management, legal and estate issues, cash reserves, cash management & budgeting and wealth distribution. The intention of this workshop is to try and bring simplicity and understanding to a very complex and overwhelming topic. There is no cost for this workshop. Preparing the Letter of Intent for your Special Needs Child The format is designed to communicate information along with your desires and concerns for your special needs child to future caretakers. The family receives an M&L Special Needs Planning, LLC CD with all the questions to be filled out. We fill this out as best as we can during the workshop. If the families would like to meet individually we do this at our consulting rate. Annual reviews are extremely important with regards to the Letter of Intent. Cost $65.00 per CD. Birth to 3: Early Intervention We discuss the options for the new family and discuss the special needs financial planning timeline and the eventual pressure points for the family. We give list of resources to the family for related services and where to look for them. In addition we give a list of important sites that potentially can be of help for the family. We also discuss the rights of the family and what they are entitled to until the special needs child turns 21/22. There is no cost for this workshop. Age 3 – 14: IEP Process, Funding and Entitlements In this workshop we discuss the IEP process, funding and entitlements and where to go if you need help advocating for your child. We give a list of resources with regards to the IEP process, advocacy and other relevant websites. There is no cost for this workshop. Special Needs Transition Planning Age 15 – 21/22 The workshop is an overview so families can understand what transitioning planning is, what the terms mean and examples of post secondary options. If a family needs further help in any of these areas we will meet with the families individually. We go into detail defining the following terms: Supplemental Security Income (SSI), Medicaid, Guardianship and Post Secondary Options – basically all the relevant terminology for the age span. There is no cost for this workshop. Age 21/22 and Over: Residential Planning and Employment This workshop describes some residential planning concerns and employment options. Resources will be available. There is no cost for this workshop. Estate Planning for the Special Needs Families with a Special Needs Attorney This workshop reviews the basics of the Comprehensive Financial Life Planning concepts and the importance of the team approach. The special needs attorney discusses the importance of getting the estate issues together for the special needs family. We discuss the terminology of estate planning (wills, trusts, powers of attorneys, living wills, HIPPA, etc) in addition to discussing the specifics of special needs estate planning (guardianship, special needs trusts, government benefits, funding options etc) There is no cost for this workshop. M&L Special Needs Planning, LLC Services Comprehensive Special Needs Financial Life Plans Special Needs families hire M&L Special Needs Planning, LLC to create a Comprehensive Financial Special Needs Life Plan for them. We have a series of meetings and in these meetings we identify and prioritize the family’s goals and objectives; analyze the present financial situation with respect to these goals by reviewing family resources, legal documents, investments, insurance and other related matters. From this information we put together a plan with recommendations and steps to maximize and protect personal and public resources. If the recommendations are acceptable to the family we work with the family to implement the recommendations and set up periodic reviews. Part of the Comprehensive Financial Life Plan is to calculate the approximate supplemental costs for the life of the special needs child. We do this as part of the comprehensive special needs life plan. We gauge the approximate supplemental costs of the special needs child by the extent of the disability and special needs. This is an ongoing process as the child gets older and changes. Hence the importance of periodic reviews of the original Comprehensive Financial Life Plan. Comprehensive Financial Special Needs Life Planning is an ongoing process. Compensation for planning fees, implementation services and reviews will be discussed during the first meeting. After the first year we will meet with the family on a consulting basis for an hourly rate. Non Comprehensive Financial Life Plans Like the Comprehensive Special Needs Financial Life Plans, we will create a comprehensive non-special needs financial plan working with your unique set of goals and objectives. We will discuss and make recommendations throughout the process. After mutual agreement, the recommendations will be incorporated into the plan. The client may implement the recommendations independently or continue to work with us throughout implementation. Compensation for planning fees, implementation services and reviews will be discussed during the first meeting. After the first year we will meet with the family on a consulting basis for an hourly rate. Consulting For an hourly fee, we evaluate existing special needs planning documents as a second opinion or at a specific decision point, such as funding for services, guardianship, government eligibility, transitioning or residential living. Reminder Program to create organization to the uncertainty of the special needs family The reminder program is a program to send emails at specific pressure points of the special needs child and with regards to the pyramid. If we discuss any potential changes to those needs in previous meetings, we would send a meeting request. If a family completes a Comprehensive Special Needs Life Plan this is a free service for the first year. There is an annual fee for this service. Early Stages Center 1125 New Jersey Avenue, NW, Washington, DC 20001 202-698-8037, www.earlystagesdc.org Early Stages is a District of Columbia Public Schools program for children three to five years old. We are here to help you identify any delays that your child may have and provide appropriate services to help address those delays. Children referred to the Early Stages Center will receive a full evaluation and treatment or services for a diagnosed delay. These services are available to all families that live in the District, whether your child goes to public school, private school, is home-schooled or has not yet entered the school system. |
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