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Showing posts from August 9, 2020

Individualized education programs this fall

From Child Neurology Foundation Our Back To School series continues for Part 2 this week, where we look at several different challenges our community is facing this fall.  Have a read of  this comprehensive blog post  that delves into implementing individualized education programs during our new normal, with a look at what families are able to request during these unusual times. In addition to background information to help you better understand your rights and potential options, we also have answers to more than  two dozen commonly asked questions  from parents and families. The questions include: What are compensatory services, and do they apply to the current situation?   Can my child still access the assistive technology they had at school?  Can my child still get school-provided transportation services?  If a school can’t give an assessment, how can parents demonstrate/document regression or new needs? If my child is immune compromised, what is the policy to notify parents of expo

Supporting Mental Health Needs of Very Young Children Via Telehealth

TAN Early Childhood Learning Community Webinar – Supporting Mental Health Needs of Very Young Children Via Telehealth Thursday, August 20 3:00 - 4:00 p.m. EDT   Register Today! Understanding that this time is stressful for families and clinicians and has brought new technology and challenges into mental health practice, early childhood expert Dr. Mary Margret Gleason will present to our Early Childhood Learning Community strategies to support and engage young children and their families in therapeutic services vie tele connections. We will spend time examining the challenges and unique opportunities presented by telehealth, and discussing strategies to approach developmentally-appropriate assessment, diagnosis, and treatment when you cannot be in the room with a family. We will have lots of time for questions and discussion, acknowledging that this is new for therapists

Forum for Children’s Well-Being: Promoting Cognitive, Affective, and Behavioral Health for Children and Youth

Family Voices has recently joined the National Academies of Sciences, Engineering and Medicine Forum for Children's Well-Being. In preparation for their September workshop, the Forum is interested in hearing from kids and families about their experiences with COVID-19 and racism. I have attached the description and questions that they are interested in using.   NOTE - I have clarified that the interviewer will adjust wording of the questions according to the age of interviewees. Timeline : NASEM is interested in completing the interviews by Friday 8/21.  Interview format : They will be conducted via Zoom and last no more than 15 minutes. The interviews will be recorded and if permission is given, the Forum may use video clips or statements from the interview to inform and feature at the workshop and in their work going forward.  Unfortunately there is  no compensation  for time with this opportunity to share your voice. Contact : If interested, please reach to Erin Kellogg at email

Child Welfare Panelist, American Academy of Pediatrics

  The American Academy of Pediatrics is seeking applications for a panel of five individuals with lived experience in the child welfare system who will serve as panelists at a series of virtual convenings on key child welfare policy issues. Panelists will receive financial compensation for their time and expertise.   In Fall 2020, the American Academy of Pediatrics will host a series of three virtual convenings on key child welfare policy issues with critical input, feedback, and contributions from a panel that brings diverse lived and professional experiences. This panel will work closely with AAP to inform the development of innovative child welfare policy recommendations that can inform AAP‘s work educating policymakers in the 117 th  Congress and next presidential administration.    Over a four-month period, the panel will participate in and support the development of three meetings to exchange ideas, collaborate and brainstorm with relevant stakeholders, and develop ideas for adva

Adulthood: Family-Centered Planning Webinar

Research demonstrates the effectiveness of Family-Centered Transition Planning in increasing student and parent expectations for adult life, student career decision-making, and student participation in employment and post-secondary education. Tune in to learn the latest sustainable processes for implementing a Family-Centered Transition Planning model for youth and young adults with autism spectrum disorders. Adulthood: Family-Centered Planning Alan Kurtz, Ph.D. University o f Maine  Wednesday, Aug 19th 1 p.m. Eastern Time (U.S.) Register here:

JOIN COURAGEOUS PARENTS NETWORK for a LIVE ZOOM EVENT: Go ahead and ask, about end of life

  JOIN CPN for a LIVE ZOOM EVENT Wednesday August 19, 4-5pm EST Go Ahead and Ask! An honest discussion about end of life. CPN invites parents (and providers) into the ZOOM Room to explore a place we don’t want to go --   While many of us have learned about birthing a child from multiple sources, there is little information about how to prepare, process and survive the death of a child. As hard as it is, we believe the willingness to talk about all aspects of this ahead of time makes us better able to respond as our child's end of life approaches. At CPN, that has been our experience.   We offer you this opportunity to hear from other parents (and providers) and ask your own questions.   Featuring Guests:   Shaelyn Walle r is a pediatric acute care and palliative care nurse in Boston. She has worked in pediatric palliative care and hospice for 5 years and became a certified hospice and palliative care pediatric nurse (CHPPN) in 2018. She is working to start a palliative care program

Preparedness Resources for the Power-Dependent Medical Equipment Population

Webinar 8/18: Preparedness Resources for the Power-Dependent Medical Equipment Population Register to attend the webinar on Tuesday, August 18 at 12:00 - 1:00 p.m. ET . The  Federal Emergency Management Agency  (FEMA) is hosting a webinar about how people who rely on electricity- and battery-dependent assistive technology and durable medical equipment can prepare for emergencies.  Subject matter experts will offer emergency preparedness tips and resources, including checklists, to assist in planning for a power outage. They will also provide guidance on how people with disabilities can prepare for extreme heat events. FEMA works to ensure equitable access for all to any services and programs that are provided by the agency. If you need a reasonable accommodation, please make your request in an email to . Last minute requests will be accepted, but may not be possible to fulfill. Register for the webinar .

Early Access to Milestone Tracker App-Deadline to Reply is TODAY!

The Centers for Disease Control and Prevention’s (CDC)  Learn the Signs. Act Early.  program is updating its  Milestone Tracker  app , a mobile app designed to help parents track their children’s developmental milestones with easy-to-read illustrated checklists, encourage their children’s development with tips and activities, and more! Before the newest version of the app is released, they are looking for parents who are willing to download the test version of the app, try it out for a few weeks, provide feedback,  and receive a $50 gift card in appreciation for their time.     Four Easy Steps to Participate!   If you would like to participate,  please email  by August 12 th  with the following information:   Your Name Contact Information (email address, telephone number, best time to reach you) Number of children and age of each child Type of phone you have (iPhone or Android)    After your email is received we will send you a brief survey to determine i

New training opportunity – Enhancing person centered outcomes through the LifeCourse Framework

The Bureau of Developmental Disabilities Services is pleased to offer a three part webinar training series providing information and techniques to aide in the development of meaningful outcomes through the person centered individualized support plan by utilizing LifeCourse principles and tools. We will explore and demonstrate how practicing the thinking and using the tools will result in a plan that is meaningful, appropriate, and supports the individual in living their best life. This training is open to individuals, families, case managers and waiver service providers. All attendees can expect to learn more about their valued role as a member of the individualized support team and how they influence the development and success of a plan that is strength based, person centered and utilizes integrated supports. Participation in all three sessions is not required but recommended. Participants will receive a certificate of attendance for each session they attend. Participants who attend

Oral Health for Hoosiers with Disabilities: Survey of Family Caregivers ending August 14

  Are you a Parent or Family Caregiver of an individual with a disability? Survey ending August 14   The Center for Health Equity at the Indiana Institute on Disability and Community wants to hear from parents and family caregivers of individuals (minor or adult) with disabilities, about their child’s dental care experiences and oral health needs in Indiana. The Center is inviting family caregivers to  complete survey by August 14 . The results will help us better understand how oral health can be improved for Hoosiers with disabilities. The first 300 participants will be eligible for a $10 electronic gift card for completing the survey. This study is funded by the Indiana Governor’s Council for People with Disabilities.   All responses will be released as part of group summaries, and individual responses will remain anonymous.  The entire survey should take no more than 30 minutes to complete.   To participate in the electronic survey, click on the following link:

Patient, Parent, and Family Member Leadership Opportunity

The Midwest Genetics Network is currently recruiting individuals with a genetic condition as well as parents and other family members to join as stakeholders. This seven-state initiative focuses on improving access to genetic services, particularly for patients and families from underserved communities. Patient and family representatives can participate in virtual meetings in various focus areas, as well as our new dedicated Patient and Family Council. The Patient and Family Council is open to any individual with a genetic condition, parents and other family members from within the seven-state region. The Midwest Genetics Network recognizes that individuals with genetic conditions and their family members bring an important and unique perspective to the work and are valued for their knowledge and experience. The Patient and Family Council offers an opportunity for patients, parents, and family representatives to connect with others, provide input on projects related to increasing acces

Health Equity for People with Disabilities

The Americans with Disabilities Act was enacted to prohibit discrimination against people with disabilities in all area of public life. In honor of the anniversary, the Medicare- Medicaid Coordination Office is sharing messages and materials. Getting the Care You Need by Family Voices Indiana on Scribd

New video features Indiana 211

Last month, Indiana’s statewide community resource referral agency, Indiana 211, became part of the FSSA family. The new video highlights the many ways 211 serves Hoosiers, from helping find enough food for families, housing, or many other local resources. The video features several of the Indiana 211 community resource navigators who LISTEN to Hoosiers every day and who will work hard to help meet their unique needs.  

Quarantine Burnout is a Real (Mental and Physical) Health Risk

From Additude newsletter written by Dr. Liz Matheis Pandemic fatigue has set in. After two seasons in isolation, mental health providers continue to see increased depression, anxiety, and exhaustion. Restless, active ADHD brains may be even more prone to these feelings — and in even greater need of help. Here is how to get it. Life and liberty changed drastically in March 2020 – a month that will be forever etched in our national history and collective consciousness. So many daily freedoms — running an errand, meeting up with a friend for dinner, exercising at the gym, getting a haircut, hugging another person, going to a party — were erased totally and quickly. I grumbled through the first few weeks of Zoom calls and remote learning and grocery delivery thinking it would come to an end in a month, at the very longest. I was wrong. Very wrong. Here we are, four months and two seasons later, we are still in quarantine as the  COVID-19 virus  continues to threaten our elders, ourselves,