Family to Family

[Familyhealthnotes] Family Health Notes-October

Institute for Disability Studies

Family Health Notes

October 2019

Inside this issue:

1) Pacer’s-National Bullying Prevention Month (resource)

2) Mississippi Parent Training Information Center (MS-PTI) (resource/training)

3) The Washington Post (article)

4) E-Parent-Constructing the Ideal Home Environment for Children with Autism Spectrum Disorder (article)

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1) Pacer’s-National Bullying Prevention Month (resource)

Pacer’s National Bullying Prevention Center is focused on creating awareness and empowering families to identify and prevent bullying. This guide provides an overview for families to learn what to do if a child is being bullied, has witnessed bullying or is showing conerning behavior. For additional information please visit:

https://www.pacer.org/bullying/resources/parents/

2) MS-PTI (resource/training)

MS-PTI will be hosting an online training with REACH-MS on Parenting with Positive Behavioral Interventions & Supports. This will be a one hour online training opportunity.

For more information and to register please visit:

https://register.gotowebinar.com/register/5368448379471008257

3) The Washington Post (article)

In recent news the FDA puts out heavy warnings for a call to action for the CEO of the JUUL company, Kevin Burns. They are calling for a change in their marketing strategy, largely targeting youth, saying JUUL’s are safer than regular cigarettes. The FDA is pushing for “immediate” action to be taken. Please read more about this at:

https://www.washingtonpost.com/health/2019/09/09/fda-bashes-juul-illegally-marketing-vaping-products-less-harmful-than-cigarettes/?noredirect=on&wpisrc=nl_sb_smartbrief

4) E-Parent- Constructing the Ideal Home Environment for Children with Autism Spectrum Disorder (article)

This article provides information about the effects of the home environment on children with autism. Practical tips are listed for families to consider when making environmental changes for their own child, home and culture. To read this article, follow the link below:

http://www.eparent.com/eparent-connect/constructing-an-ideal-home-environment-for-children-with-autism-spectrum-disorders/

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~~~~~~~~~~~~~~~~~~Family Health Notes~~~~~~~~~~~~~~~~~~

Family Health Notes is sponsored by the Institute for Disability Studies (IDS), Mississippi’s University Center for Excellence in Developmental Disabilities (UCEDD) at The University of Southern Mississippi. IDS provides university training, community service activities, research and information that promote the independence, productivity, and community inclusion of individuals with disabilities and their families. For more information about IDS, visit http://www.usm.edu/disability-studies or call 1.888.671.0051 (TTY). To make a tax-deductible gift to IDS, visit http://www.usm.edu/disability-studies/support-ids.

The Family-to-Family Health Information and Education Center (F2F) is a family-focused, family managed resource center that empowers families of Mississippi children with special health care needs to be partners in the decisions made concerning the health of their children. F2F is funded by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (GR#H84MC07948).

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[Familyhealthnotes] Family Health Notes-September

Institute for Disability Studies

Family Health Notes

September 2019

Inside this issue:

1) Books, Balls, & Blocks - Help Me Grow Mississippi (resource/event)

2) Call for Participants Vanderbilt Research Study (event)

3) Children’s Eye Health and Safety Month (resource)

4) National & Mississippi Epilepsy Foundations Gearing Up for 2020 Walk to End Epilepsy (resource/event)

5) Special Education Boot Camp - Mississippi PTI (event)

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1) Books, Balls, & Blocks- Help Me Grow Mississippi

Mississippi Families for Kids and Help Me Grow Mississippi will be hosting a developmental screening event for families with children ages

birth - 5 years old. There will be play stations set up for children while parents complete developmental screening questionnaires and visit resources from various agencies in the Jackson community.

Time: 10:00 am – 3:00 p.m.

Date: Saturday, September 28^th

Where: Salvation Army

570 East Beasley Rd

Jackson, MS

For more information, contact 1-601-597-7670 or cslaughtermffk@outlook.com.

2) Call for Participants - Vanderbilt Research Study

The Transitions Lab at Vanderbilt is conducting a research study on language development in adulthood for males and females with Fragile X Syndrome. They are looking for families who have a child with Fragile X Syndrome in or entering the last year of high school. The study involves four assessment visits over a 3-year period; two visits will be completed at Vanderbilt and two will be completed from home. To participate, email transitions@vumc.org.

3) Children’s Eye Health and Safety Month

A child’s visual health is vital to his/her development and education. It is important to stay informed and to have resources to monitor a child’s visual health. The National Center for Children’s Vision and Eye Health is an organization rich with information and resources to help families and professionals.

For more information, visit https://nationalcenter.preventblindness.org/?utm_campaign=fyi_newsletter&utm_medium=email&utm_source=govdelivery.

4) National & Mississippi Epilepsy Foundations Gearing Up for 2020 Walk to End Epilepsy

The Epilepsy Foundation is gearing up for the 2020 Walk to End Epilepsy and searching for teams and sponsors. The walks will take place in Northern, Central, and Southern Mississippi to raise funds and awareness for local programs. Visit the website below to register your team, donate, or volunteer.

Time: 10:00 AM – 12:00 PM

Date: April 18, 2020

Where: Jones Park in Gulfport, MS

For more information please visit: www.WalktoEndEpilepsy.org.

5) Special Education Boot Camp - Mississippi PTI

Mississippi Parent Training and Information is hosting a Special Education Boot Camp for families and caregivers of individuals with disabilities. Topics will include advocacy, communication and conflict resolution, and Individualized Education Programs.

Time: 9:00 am - 12:00 pm

Date: Saturday, September 28^th

Where: Ocean Springs Upper Elementary

2320 Government Street

Ocean Springs, MS 39564

For more information or to register, visit http://events.r20.constantcontact.com/register/event?oeidk=a07egk60h0b9fbd5188&llr=julfnscab

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~~~~~~~~~~~~~~~~~~Family Health Notes~~~~~~~~~~~~~~~~~~

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[Familyhealthnotes] Family Health Notes-August

The Institute for Disability Studies

Family Health Notes

August 2019

Inside this issue:

1) Community Conversations (resource/event)

2) New Study on Language Development in Young Adults with Fragile X Syndrome with Vanderbilt Kennedy Center (event)

3) Project ECHO with Autism Speaks (resource)

4) The National Resource Center for Patient/Family-Centered Medical Home (resource/website)

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1) Community Conversations

Disability Rights Mississippi, Mississippi Council on Developmental Disabilities, and the Institute for Disability Studies will be hosting a series of events around the state to provide people with disabilities and their families valuable information and resources. These events will also provide a platform for speaking with professionals and networking with other families in each community.

Time:

4:30 - 6:30 p.m.

Date & Location:

August 8th-Gulfport Knight Non-Profit Center - Seaway Road

August 20th-Southhaven Public Library - Northwest Drive

August 27th-Vicksburg United Way West Central - South Street

For more information, contact 1-800-772-4057.

2) New Study on Language Development in Young Adults with Fragile X Syndrome with Vanderbilt Kennedy Center

Vanderbilt Kennedy Center is currently recruiting participants diagnosed with Fragile X syndrome for a study on language development. Participants must be in or entering the last year of high school. Those in the study will take part in four assessment visits over a three year period. A stipend will be offered to participants upon completion of the assessments.

For more information please contact: transition@vumc.org or (615) 322-2943

3) Project ECHO with Autism Speaks

Autism Speaks has funded a new project, ECHO Autism Primary Care, to provide training for primary care physicians on early recognition and identification of autism in young children. This virtual training with autism experts guides physicians on identifying signs earlier in children and best practices in screening, identification and medical care.

For more information, visit https://www.autismspeaks.org/science-news/echo-autism-primary-care-autism-screening?utm_source=email&utm_medium=text-link&utm_campaign=espeaks.

4) The National Resource Center for Patient/Family-Centered Medical Home

The Maternal and Child Health Bureau and the American Academy of Pediatrics have partnered to create the National Resource Center for Patient/Family-Centered Medical Home, formerly known as the National Center for Medical Home Implementation. The focus of this center is to ensure all children and youth receive care within, and have access to, a medical home.

For more information please visit:

https://medicalhomeinfo.aap.org/about/Pages/default.aspx.

~~~~~~~~~~~~~~~~~~Family Health Notes~~~~~~~~~~~~~~~~~~

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[Familyhealthnotes] Family Health Notes-July

Institute for Disability Studies

Family Health Notes

July 2019

Inside this issue:

1) TSA Cares Program for Travelers with Disabilities (resource/video)

2) Challenges and Supports of Family Caregivers in Participant-Directed Programs (resource/article)

3) Baby’s Busy Day – Being One is So Much Fun! PDFs Now Available (resource)

4) AUCD Celebrates the 20^th Anniversary of the Olmstead Act (resource/article)

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1) TSA Cares Program for Travelers with Disabilities

Those traveling with families members with disabilities can reach out to the Transportation Security Administration (TSA) for help navigating the security screening process. The TSA Cares Program is a helpline for travelers with disabilities, medical conditions and other special circumstances that may require additional assistance during the security screening process.

For more information, visit https://www.tsa.gov/travel/frequently-asked-questions/i-need-assistance-during-screening-there-number-i-can-call-my

2) Challenges and Supports of Family Caregivers in Participant-Directed programs

The experiences of family caregivers who support individuals with disabilities are often researched. The aim of the following study was to describe what family caregivers identify as challenges and gaps in family support resources.

To access the article visit https://bit.ly/2IUCjYL.

3) Baby’s Busy Day – Being One is So Much Fun! PDFs Now Available

The Center for Disease Control (CDC) has recently released some wonderful books for parents as PDF’s on their website. These books are fun for the kids and a useful tool for parents to know the milestones to look for as their child grows. These PDF books are available on the CDC website in English and Spanish.

For more information, visit https://bit.ly/2KEBnJ1

4) AUCD Celebrates the 20^th Anniversary of the Olmstead Act

June 22^nd marked the 20th anniversary of the U.S. Supreme Court's landmark Olmstead decision, which declared that people with disabilities have a civil right under the Americans with Disabilities Act to live and participate in their communities. This ruling was important in the transision of individuals with disabilities from institutions to community-based settings with appropriate services and supports.

For more information please visit https://www.aucd.org/template/news.cfm?news_id=14168&parent=16&parent_title=Home&url=/template/index.cfm?.

~~~~~~~~~~~~~~~~~~Family Health Notes~~~~~~~~~~~~~~~~~~

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[Familyhealthnotes] Family Health Notes-May

Institute for Disability Studies

Family Health Notes

May 2019

Inside this issue:

1) National Multiple Sclerosis Society: “Childhood MS:A Guide for Parents” (resource)

2) MSPTI: “Promoting Positive Behavior in Your Child” (online training)

3) Epilepsy Foundation of Mississippi: Alvin P. Flannes Summer Camp

(resource)

4) Mississippi State Department of Health (MDHS): “Children and Youth with Special Health Care Needs (CYSHCN) Services” (resource/brochure)

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1) National Multiple Sclerosis Society: “Childhood MS:A Guide for Parents” (resource)

If your child has been diagnosed with Multiple Sclerosis (MS), or MS has been suggested as a

possible cause for your child’s symptoms, you may have lots of questions. What caused it?

How will it affect my child? Can it be cured? What does the future hold? This guide is intended to provide answers to some of these questions. It should help you to understand more about the care your child should receive, and the kind of support you are entitled to in order to manage the changes MS can bring. If you have any more questions about MS, you can find the contact details for useful resources at the end of the guide. For more information, visit

www.smrc.state.ms.us/Community_Services.html.

Also, you can download the guide here: https://www.nationalmssociety.org/NationalMSSociety/media/MSNationalFiles/Brochures/Childhood-MS-A-Guide-for-Parents.pdf.

2) Mississippi Parent Training and Information Center (MSPTI): “Promoting Positive Behavior in Your Child” (online training)

Effective discipline is essential to raising children who have self-control, behave well with peers and adults, and choose to avoid risky behaviors. The Mississippi Parent Training and Information Center (MSPTI) is hosting a webinar to discuss practical and positive ways of effective discipline.

Presented by: Patty Gautier, Family, Data & Dissemination Coordinator, REACH MS

Date: May 20^th, 2019

Time: 12 p.m.-1 p.m.

3) Epilepsy Foundation of Mississippi: Alvin P. Flannes Summer Camp

The Alvin P. Flannes Summer Camp is provided for Mississippi children ages 7-15 living with Epilepsy. This camp allows the children to have a great summer camp experience. Camp activities include canoeing, fishing, swimming, crafts, horse back riding and more! Nursing staff stays on site 24/7. For more information, please send inquiries and camp applications to Bonnie Holliday bholliday@efa.org or call the foundation office at 601.936.5222 ext. 1655.

For more information, visit http://epilepsy-ms.org/alvin-p-flannes-summer-2019/.

4) Mississippi State Department of Health (MDHS): “Children and Youth with Special Health Care Needs (CYSHCN) Services” (resource/brochure)

The Mississippi State Department of Health’s Children and Youth with Special Health Care Needs Services (CYSHCN), provides family-centered care coordination services for children and youth whose health care needs involve a range of specialized providers.

For more information, visit http://www.msdh.state.ms.us/msdhsite/_static/resources/7220.pdf.

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