Transition for Parents and Caregivers

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.

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.

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.

ADDitude Magazine provides information that helps readers to:

• determine whether you or a loved one has ADHD, learning disabilities, or another condition
• research treatment options and find the right combination of medication and natural treatments to manage your or your child’s symptoms
• secure 504 or IEP accommodations for your child at school
• remove the isolation and stigma that still surround too many with the condition
• create organizational systems that will help you keep track of your keys and get to work on time every day
• distinguish symptoms of mood disorders, anxiety, learning disabilities, oppositional defiant disorder, and other mental health conditions from ADHD
• connect with a community of parents and adults who understand the intense emotions and daily joys and headaches of living with ADHD

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.

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

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.

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

• Educational Enhancement
• Social Services
• Workforce Investment
• Community Wellness
• Art + Media
• Advocacy

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.

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 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