Family to Family

[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.

***PLEASE NOTE: If you are unable to access any of the links in Family Health Notes, please make sure the entire link is highlighted. If a link is not highlighted, please copy and paste the entire link into your Web browser.

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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-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.

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

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[Familyhealthnotes] Health Notes-April

Institute for Disability Studies

Family Health Notes

April 2019

Inside this issue:

1) Gulfport ARC: Informational Session: ID/DD Waiver Program Through SMRC (information session)

2) MSPTI: “All About Me-A Get to Know Me Guide for Children and Students With disAbilities” (resource)

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

(resource)

4) MSPTI: Positive Solutions for Families: Tips for Parents of Young Children with Challenging Behavior (online training)

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1) Gulfport ARC: Informational Session: ID/DD Waiver Program Through SMRC (information session)

Do you know what services the ID/DD Waiver covers? When can it be used? What is the process to access services under the waiver? Who do you contact? What documentation do you need to apply for the waiver? When should you apply for the waiver? What is it??

Presented by: Mamie Carlson, MS, LCIDDT, LPT - Director of Community Services SMRC

Date: Saturday, April 13, 2019

Time: 9:30 a.m.

Place: Gulfport ARC, 3109 Gulf Ave, Gulfport, MS 39503

More Information: www.smrc.state.ms.us/Community_Services.html

2) MSPTI: “All About Me-A Get to Know Me Guide for Children and Students With disAbilities”

Thisguide/workbook is for parents and schools to help everyone in a child with special need’s life get on the same page about that child. The more consistent information provided about a child, the better quality of life and education that child can receive.

More Information: http://www.mspti.org/upload/file54_allaboutme.pdf

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

The Alvin P. Flannes summer camp is a summer camp for 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.

More Information: http://epilepsy-ms.org/alvin-p-flannes-summer-2019/

4) MSPTI: Positive Solutions for Families: Tips for Parents of Young Children with Challenging Behavior (online training)

Has life with your young child become filled with conflict and confusion? Does it seem as if the simplest activity can quickly turn into disaster when your child’s behavior is out of control? You’re not alone. Many, if not most, parents find themselves struggling with behavior at some point. The good news is that there are evidence-based, effective strategies (Positive Behavior Interventions and Supports-PBIS) that you can use to create positive solutions for your family. Join us!

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

Date: April 15^th, 2019

Time: 12 pm-1 pm

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

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[Familyhealthnotes] Family Health Notes-February 2019

Institute for Disability Studies

Family Health Notes

February 2019

Inside this issue:

1) MSPTI- Extended School Year: What does it mean for your child (webinar)

2) Social Security Benefits- Updates to Benefits for Children with Disabilities (article)

3) Sibling Leadership Network- Insight into Family Support and Sibling Perspectives (video)

4) Pine Belt Mental Healthcare- Let’s Talk: Discussing Mental Health in the Black Community (event)

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1) MSPTI- Extended School Year: What does it mean for your child (webinar)

Mississippi Parent Training and Information Center (MSPTI) is a project of the Mississippi Coalition for Citizens with Disabilities and is funded by the U.S. Department of Education, Office of Special Education Programs (OSEP). The staff is made up of dedicated parents of children with disabilities, individuals with disabilities, and professionals.

This webinar will provide parents with a greater understanding of Extended School Year, how a child may qualify, and what it means to their child.

Presented by: Pam Dollar, Executive Director, MSPTI

Date: Tuesday, February 26, 2019

Time: 12:00 pm-1:00 pm

Registration: https://register.gotowebinar.com/rt/8338437096535007491

2) Social Security Benefits- Updates to Benefits for Children with Disabilities (article)

https://www.ssa.gov/pubs/EN-05-10026.pdf

The Social Security Administration has update its Benefits for Children with Disabilities pamphlet (2019) describing benefits available to eligible children with disabilities and how to apply. Some benefits included are Supplemental Security Income (SSI), Social Security Disability Insurance (SSDI), health insurance, Medicaid, Medicare, and employment support programs.

3) Sibling Leadership Network- Insight into Family Support and Sibling Perspectives (video)

Resource Spotlight: Videos Provide Insight into Family Support and Sibling Perspectives

Please check out these great videos that were supported through the Family Support Resource and Training Center (FSRTC) www.fsrtc.ahslabs.uic.edu - Family Support: Voices of People with Disabilities Improving; Family Support: Ideas from People with Disabilities’; Gaining Insights: Amira’s Story Liz’s Sibling Stance

4) Pine Belt Mental Healthcare- Let’s Talk: Discussing Mental Health in the Black Community (event)

Crossover Xpand of Pine Belt Mental Healthcare Resources is hosting a community event in observance of Black History Month and cultural competency. “Let’s Talk: Discussing Mental Health in the Black Community” is an open forum and panel discussion event.

Date: Thursday, February 28, 2019

Time: 6:00 pm

Where: CE Roy Community Center

300 E. 5^th Street

Hattiesburg, MS

Contact: Kameo Allen

601-544-4541

kameo.allen@pbmhr.org