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Transition for Parents and Caregivers

Learn more about Transition for Parents and Caregivers | View Local Resources

Got Transition: The Center for Health Care Transition Improvement

Got Transition, the Center for Health Care Transition Improvement, is funded by the federal government and aims to improve the health care transition process for youth with disabilities nationwide.

The site includes an interactive health provider section that corresponds to the three Six Core Elements' practice settings. It also includes a set of frequently asked transition questions developed by and for youth/young adults and families. In addition, the site contains new information for researchers and policymakers and a robust listing of transition resources.

What Does Health Have To Do With Transition?

This article explains the importance of health care transition and how health can affect other areas of transition like employment, post-secondary education, and independent living.

Transition Timeline

Review this document to see a recommended timeline for transition milestones, identify where you are, and determine what action(s) you should take.

Portable Medical Summary

Here is a medical summary that you can fill out with your teen, which they can carry with them at all times. You can also save it electronically to a jump or zip drive which they can carry around on a keychain.

Family Voices
1012 Pennsylvania AVE SE, Washington, DC
(202) 265-1432 (voice)

Family Voices is a national organization working in collaboration with various local organizations on behalf of Children and Youth with Special Health Care Needs (CYSHCN) . Family Voices provides parents of children with chronic conditions access to specialty healthcare resources and to other families.

NOTE: Family Voices and the Family-to-Family Health Information Center are separate programs. The latter is grant funded under various Family Voices affiliates.

AASPIRE's Interactive Healthcare Toolkit

The Academic Autism Spectrum Partnership in Research and Education (AASPIRE), in collaboration with the Autistic Self Advocacy Network, has created a new interactive toolkit to help improve healthcare services for adults on the autism spectrum.

For patients on the autistic spectrum and their supporters:

Patient materials include checklists and worksheets to help patients:

  • schedule appointments
  • prepare for visits
  • describe symptoms, and
  • follow-up on provider recommendations

The toolkit also includes detailed information about topics including:

  • navigating the healthcare system
  • staying healthy, and
  • patient rights.

The centerpiece of the AASPIRE Healthcare Toolkit is the Autism Healthcare Accommodation Tool, an online tool that allows patients or their supporters to create a customized accommodations report for their providers.

For healthcare providers:

The Autism Healthcare Accommodation Tool mentioned above will help healthcare providers understand what accommodations or strategies might help that individual patient. It is crucial that healthcare providers be equipped with the tools and knowledge necessary to provide better quality healthcare to autistic adults.

Other provider materials include:

  • general information on autism,
  • tips for facilitating healthcare interactions, and
  • information on legal and ethical issues related to autism.

American Association of People with Disabilities
2013 H Street, NW, 5th Floor, Washington , DC 20006
202-457-0046 (voice) | 866-536-4461(fax)

The American Association of People with Disabilities is the nation's largest disability rights organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change.

ASAN's Toolkit for Advocates on Health Care and the Transition to Adulthood
PO Box 66122, Washington , DC 20035
info@autisticadvocacy.org

ASAN is proud to announce the release of a comprehensive toolkit to empower people with disabilities and their families to manage their own health care as they transition to adulthood.

Transition to Adulthood: A Health Care Guide for Youth and Families provides people with people with disabilities and their families with information on how to choose a source of health care coverage, create a health care support network, integrate health care transition goals into their educational plans, and manage their health care. It includes useful guides and worksheets for keeping track of health care records, making doctor's appointments, and talking to doctors about health concerns.

The toolkit also includes Model Supported Health Care Decision-Making Legislation and its accompanying Questions and Answers resource. The model legislation, which ASAN developed in collaboration with the Quality Trust for Individuals with Disabilities, would enable people with intellectual or developmental disabilities to name a trusted person to help communicate with doctors, understand health care information, make informed decisions about health care, and/or carry out daily health-related activities. Advocates can use this model legislation when talking to their state legislators about ways to support people make independent health care decisions.

ASAN's policy brief, The Transition to Adulthood for Youth with ID/DD: A review of research, policy, and next steps, discusses the range of challenges facing youth with intellectual and developmental disabilities as they approach adulthood, including potential loss of health care coverage, barriers to obtaining adult-oriented care, and lack of support in making health care decisions. It outlines several policy recommendations to eliminate these barriers, including expanding access to income-based Medicaid coverage, increased education and awareness of the importance of transition and decision-making supports, and increased research on best practices in transition planning.

Autism Speaks Family Services Resource Guide

The Autism Speaks Family Services Resource Guide is a reference tool that enables users to access service listings by state, age group, and category. Categories include:

  • Advocacy, Financial and Legal Resources
  • Community and Support Network
  • Health Services
  • And more

Disability.gov’s Guide for Family Caregivers

This guide connects you to programs, services, government agencies and organizations that can help you as you care for a spouse, child, parent or other family member.

Latin American Youth Center
1419 Columbia Road, NW, Washington , DC 20009
202.319.2225 (voice) | 202.462.5696 (fax)

LAYC provides multi-lingual, culturally sensitive programs in the following areas:

Educational Enhancement
  • Standards-based culturally competent year-round tutoring and homework assistance
  • Healthy recreation and fitness
  • Computer literacy classes
  • College preparation
Social Services
  • Counseling
  • Prevention
  • Child placement
  • Residential housing
Workforce Investment
  • Job readiness and life skills training
  • Job placement services
  • Computer instruction
  • Preparation to pass the General Education Development (GED) examination
Community Wellness
  • Promoting health and wellness
  • Building cultural peace
  • Addressing issues of homelessness
Art + Media
  • Fine arts
  • Photography
  • Video
  • Radio
  • Media production
  • Music
  • Creative writing
Advocacy
  • Influencing public policy, practices and social systems that affect low-income and minority youth

M&L Special Needs Resources Webpage
5603 Potomac Ave. NW, Washington, DC 20016
855.344.9771 (voice) | 855.344.9771
info@specialneedsplanning.net

At M&L Special Needs Planning, we feel that access to the right information is the key to planning a successful future. In keeping with our goal to keep you informed, and to provide you with the tools to enable you to plan a happy and successful future for your family, we have compiled a list of special needs resources.

Organizations: This special needs resource link will take you to a list of organizations that are dedicated to providing special needs services to your family and your child with special needs. The list includes organizations from all across the country.

Advocacy: Advocacy is a public process by an individual or group which attempts to influence governmental policy and resource allocations. We have compiled a list of advocacy groups that can help you fight for issues that are pertinent to you and your family.

Government and Social Security: A key aspect of our special needs planning services involves working with governmental agencies in order to access public resources. We have provided you with the websites for a number of agencies that you may need to contact in order to receive information or benefits that are important to your family’s future.

Housing: There are a number of organizations which provide information and services related to housing issues and questions. These special needs resources are excellent starting points for understanding housing services.

Disability: This link will take you to a list of websites which contain a wealth of information related to disability, including the link to disability.gov, a redesigned federal website that connects more than 50 million Americans with disabilities to thousands of resources on disability related issues, programs and services.

Local ARCS: The ARC is the world’s largest community-based organization of and for people with intellectual and developmental disabilities. This link will take you to the websites of the ARC chapters located in Washington D.C., Maryland, and Virginia. The ARCs are located in every state and are an excellent special needs resource for the family with special needs.

Post-Secondary Options: Many parents of children with special needs worry about what their child will do after high school. We have compiled a list of programs and special needs resources to help you access information and begin to plan for this transition in your child’s life.

Health: This list of websites will help you access information regarding medical insurance, medication control, as well as other health related issues.

Transitioning: The transition from school into adulthood is an essential and often complex step in the life of a person with special needs. These special needs resources will provide you with information and access to service providers who can help you and your child with special needs on his or her transitioning journey.

Employment: This section is geared towards employment resources for adults with special needs. There is a number of organization which compile information on this topic. We will add only the best special needs resources to this category.

Magazines and Articles: We have a gathered a number of really fantastic magazines and articles that can provide you with expert information, other special needs resources, and can provide links to other members of the special needs community.

General Assistance: These resources are designed to help with any overall questions, or to provide general information or help on a wide range of topics.

Children with Special Needs: A brief description of what it means to be a child with special needs, the emotional process of the first diagnosis, and the important of early intervention. Early intervention services for both the Washington D.C. area, and nationwide are provided at the end of the article.

Children with Healthcare Needs: A brief description of what it means to be a child with special healthcare needs, how it can impact the family situation, and statistics regarding children with special healthcare needs from across America. Resources to help you find help in obtaining a diagnosis, healthcare, and support are provided.

Special Education Schools: When it comes to helping children with special needs realize their fullest potential, special education schools are a valuable asset. Follow this link for a brief article outlining exactly why special needs schools are so important, and the ways in which the Individuals with Disabilities Education Act of 2004 affects the way we educate our children with special needs.

Special Need Trust: A Special Needs Trust is the only legal solution to protect an individual with disabilities to qualify for government benefits. Follow this link for a brief explanation of what the term means and the different types of Special Needs Trusts, as well as other important points to consider when setting up your own Special Needs Trust.

Maryland Children and Youth with Special Health Care Needs Resource Locator: In order to improve access to information about needed services and resources, Maryland’s Office for Genetics and People with Special Health Care Needs created the resource database. The Department of Health and Mental Hygiene (DHMH) of Maryland created the online resource database for children and youth with special health care needs. In Maryland, over one third of families of these children report that they cannot easily access needed community based services and half of the same families report that they need help finding services for their youngsters. For families in rural areas of the state, it can be even more difficult to find specialty services.

Cerebral Palsy Guide is a website that is intended to give parents of children with cerebral palsy simple, straightforward information about cerebral palsy and its treatment, as well as to help families connect with medical and legal professionals. Designed specifically with parents of children newly diagnosed with CP in mind, the website strives to offer “peace, healing, and happiness.”

Understanding Mental Disorders: Your Guide to DSM-5

Anyone who has a medical issue – whether the issue is of a mental health nature or not – can attest to the difficulties that can arise when seeking treatment. In the medical profession, language is sometimes complicated, and treatment and policies are sometimes indecipherable. It is certainly not a stretch to say that – from a financial perspective – insurance policies are almost always inscrutable.

Understanding Mental Disorders: Your Guide to DSM-5 is the APA’s solution to the above-mentioned barriers. The publication is aimed at individuals suffering from mental illness (as well as their family, friends, and even co-workers), and acts as a “how-to” for the 5th edition of the Diagnostic and Statistical Manual of Mental Disorders. In the guide, readers will find (among other things) clear, easy-to-understand descriptions of a vast array of mental disorders (depression, schizophrenia, ADHD, autism spectrum disorder, posttraumatic stress disorder, and bipolar disorder, among others) with specific symptoms, risk factors, warning signs, and related disorders. There will be information on treatments, medications for each disorder, and a glossary of terms to enhance further understanding of each condition. As well, there is also a section devoted to support groups and how to access supports and services.

A Wider Circle
9159 Brookville Road , Silver Spring, MD 20910
301-608-3504 (voice) | 301-608-3508 (fax)
contact@awidercircle.org

A Wider Circle assists individuals and families in transition by providing:

  • Free enrollment in intensive, multi-session job preparedness, financial planning, stress management, nutrition, and parenting
  • Homegoods to formerly homeless families and veterans
  • Emergency response for new mothers, victims of fires or crime
  • Shelter enhancements (e.g., painting and landscaping)
  • Holiday food baskets and toys

We are pleased to provide you with tools and resources to help all adolescents with special needs make a smooth transition from pediatric to adult health care. Please let us know how we can make this website more responsive to your needs by contacting Peggy McManus at mmcmanus@thenationalalliance.org. We will regularly update this page with new resource material.



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