Family to Family: 2012

[Familyhealthnotes] Family Health Notes - December 2012

Institute for Disability Studies

Family Health Notes

December 3, 2012

Inside this issue:

1) That’s a Good Question – Family Voices Test Survey

2) Serve on the Board of Family Voices of Mississippi – Dec. 14, 10 a.m., Jackson

3) Transportation Needs Assessment

4) MSPTI Webinar - Journey to Independence: Understanding Transition – Dec. 12, 10 a.m.

5) CDC on Emergency Preparedness and Disaster Assistance for People with Disabilities

1) That’s a Good Question – Family Voices Test Survey

When families and health care providers work together, you have family-centered care. The national Family Voices organization is testing a survey for use in measuring whether families are getting the key elements of family-centered care. Parents and caregivers of children and youth with special health care needs can complete the test survey to help Family Voices know which questions are the best to include in the final version. The survey will take 15-20 minutes to complete and asks questions about you and your child, but nothing that will identify you. To take the Family-Centered Care Survey, visit http://www.surveymonkey.com/s/FCCA-F-1a.

2) Serve on the Board of Family Voices of Mississippi – Dec. 14, 10 a.m., Jackson

One of the founding purposes of the Family Voices organization was to assist veteran parents in helping other families who are also raising children with special health care needs. Mississippi’s newly organized Family Voices state affiliate organization, Family Voices of Mississippi, is recruiting board members from several areas of the state. Family Voices of Mississippi needs parent representation from the northwest (Delta) and southwest (Pike, Amite, and Walthall) areas of the Mississippi. The Family Voices board will meet on Fri., Dec. 14, at 10 a.m. in the third floor conference room of the IHL Building at the Mississippi Education and Research Center at 3825 Ridgewood Road in Jackson. For more information, call Cookie Smith at 1-888-671-0051.

3) Transportation Needs Assessment

To fully understand and help address the transportation needs of people with disabilities, the Mississippi Department of Rehabilitation Services is partnering with the Mississippi Transportation Coalition to conduct a transportation survey. The survey will be available from Nov. 1, through Dec. 31, via a link on Rehabilitation Services website. Numerous surveys can be completed from one computer, however, please complete only one survey per individual. To take the survey, visit Rehabilitation Service’s website http://www.mdrs.state.ms.us/default.asp and click on the link for the survey.

4) MSPTI Webinar - Journey to Independence: Understanding Transition – Dec. 12, 10 a.m.

The MSPTI webinar Journey to Independence: Understanding Transition and Self-Advocacy will be presented by Cindy Singletary, independent living specialist for LIFE of MS on the Gulf Coast on Wed., Dec. 12, at 10 a.m. Cindy will lead attendees through the common transitions of youth with disabilities and discuss preparing and possible resources for the different stages. To register, go to https://www2.gotomeeting.com/register/275525778.

5) CDC on Emergency Preparedness and Disaster Assistance for People with Disabilities

Hurricane Sandy was yet another reminder that people with disabilities need to plan ahead. Federal agencies have recognized that people with disabilities must take additional precautions to be ready for expected and unexpected winter weather events. CDC has information on emergency preparedness and disaster assistance for people with disabilities. For more information, visit http://www.cdc.gov/ncbddd/disabilityandhealth/emergencypreparedness.html.

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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 www.usm/edu/ids or call 1.888.671.0051 (TTY). To make a tax-deductible gift to IDS, visit www.usm.edu/ids/supportus.html.

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).

The Mississippi Integrated Community Systems (MICS) for Children and Youth with Special Health Care Needs project is working to create a seamless system of family-centered, community-based, culturally competent services and supports for children and youth with special health care needs (CYSHCN). MICS is funded by the Maternal and Child Bureau of the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (GR#D70MC12841).

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[Familyhealthnotes] Family Health Notes - November 2012

Institute for Disability Studies

Family Health Notes

November 7, 2012

Inside this issue:

1) National Institutes of Health Establishes Down Syndrome Patient Registry

2) Disability.gov Launches “What’s Your Connection?” Campaign

3) MSPTI Webinar – Bridge to Independence – Nov. 9, 10 a.m.

4) MSPTI Webinar - Journey to Independence: Understanding Transition – Dec. 12, 10 a.m.

5) New iPad Videos Added to Results Matter Video Library

6) Are You an Arc Angel?

1) National Institutes of Health Establishes Down Syndrome Patient Registry

A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health (NIH) has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders. For more information, visit http://www.nih.gov/news/health/oct2012/nichd-26.htm.

2) Disability.gov Launches “What’s Your Connection?” Campaign

The Disability.gov website has launched "What's Your Connection?" to commemorate the site's 10th anniversary. The initiative emphasizes that disability is a natural part of the human experience and focuses on the integral role people with disabilities play in American society. Disability.gov is managed by the U.S. Department of Labor's Office of Disability Employment Policy in collaboration with 21 federal agency partners. People nationwide can participate in the campaign by submitting a captioned photograph or video that answers the question "What's your connection to disability?" Submissions will be accepted through July 31, 2013. More information, including rules and requirements, is available at https://www.disability.gov/home/newsroom/what's_your_connection.

For the news release, visit http://www.dol.gov/opa/media/press/odep/ODEP20122184.htm#.UJQH9m_A8sd.

3) MSPTI Webinar – Bridge to Independence – Nov. 9, 10 a.m.

Learn more about Bridge to Independence, Mississippi's Money Follows the Person (MFP) initiative. MFP is a federal demonstration grant to enhance community-living options for individuals with disabilities and to help states rebalance their long-term care systems. People with disabilities often turn to nursing homes or other residential care facilities when they cannot access the support services they need to live in the community. Tamatha Byars, operations analyst for Bridge to Independence, will make this hour-long MSPTI presentation on Fri., Nov. 9 at 10 a.m. To register, go to https://www2.gotomeeting.com/register/333827490.

4) MSPTI Webinar - Journey to Independence: Understanding Transition – Dec. 12, 10 a.m.

The MSPTI webinar Journey to Independence: Understanding Transition and Self-Advocacy will be presented by Cindy Singletary, independent living specialist for LIFE of MS from the Gulf Coast on Wed., Dec. 12, at 10 a.m. Cindy will lead attendees through the common transitions of youth with disabilities and discuss preparing and possible resources for the different stages. To register, go to https://www2.gotomeeting.com/register/275525778.

5) New iPad Videos Added to Results Matter Video Library

Results Matter, a program of the Colorado Department of Education, has posted the following two new videos to the iPads in Early Childhood section of the Results Matter Video Library. They are Using iPads to Enhance Preschool Speech and Language Services, and Ricky, Lilly, and Emiliano Play with an iPad. These clips are available for viewing and may be downloaded at no cost for use in educational and professional development activities. For more information, visit http://www.cde.state.co.us/resultsmatter/RMVideoSeries_iPadsInEarlyChildhood.htm#top.

6) Are You an Arc Angel?

Be an Arc angel. Earn you wings this year by making the season special for someone with an intellectual or related developmental disability. An Arc angel is an individual, business, civic organization, or church group who anonymously provide holiday cheer to an individual with an intellectual or related developmental disability. Often at this time of year, people think of children, but there are so many adults living in community settings who have no family or limited resources. The Arc of Mississippi is collecting names from service providers of individuals who might otherwise not receive any holiday presents. Arc angels are provided with the name(s), gift ideas and sizes of people living in group homes and other community settings. Angels are asked to spend at least $25, purchase and wrap the presents and bring them to The Arc office by Dec. 3. For more information or to receive a gift recipient’s name and gift suggestions, please call The Arc office in Jackson at 601.982.1180 or 1.800.717.1180. Names will be available Nov. 1.

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

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[Familyhealthnotes] Family Health Notes - October 2012

Institute for Disability Studies

Family Health Notes

October 4, 2012

Inside this issue:

1) HealthyChildren.org Launches Free Digital Magazine

2) Free Down Syndrome Diagnosis Booklet Available

3) MS Chapter of National Alliance on Mental Illness (NAMI) Basics Educational Course – Oct. 15, Jackson

4) Financial Assistance Options for Adaptive Driving

5) Assistive Technology in Action

1) HealthyChildren.org Launches Free Digital Magazine

HealthyChildren.org launched the inaugural issue of Healthy Children e-magazine in August 2012. In addition to providing parents with reliable, pediatrician-backed guidance, the 27 page digital magazine offers an interactive experience that includes multimedia content as well as engaging, quick tip pop-ups and links to additional resources. The free digital magazine is one of several features available in a new HealthyChildren app for Apple and Android smartphones and tablets. The digital magazine is also available as a PDF at HealthyChildren.org/e-magazine. For more information about the e-magazine, visit http://www.healthychildren.org/English/tips-tools/Pages/HealthyChildren-E-Magazine.aspx.

2) Free Down Syndrome Diagnosis Booklet Available

The booklet “Understanding Down Syndrome Diagnosis” is available through the Kennedy Foundation and Kentucky’s Human Development Institute (HDI). Copyright to the nationally lauded booklet has been donated to the Joseph P. Kennedy Foundation. The booklet continues to be available in print and as a free digital download through the Lettercase program at the University of Kentucky’s Human Development Institute. Over 25,000 copies of the booklet have been distributed nationwide since 2008. Dr. Harold Kleinert, Executive Director of HDI, adds, "Understanding a Down Syndrome Diagnosis” is a perfect complement to our existing Brighter Tomorrows program, which is a recently updated website for new and expectant parents learning about Down syndrome. So we are delighted to be combining these resources to provide even more comprehensive support to families learning about a diagnosis of Down syndrome." Download the booklet at http://www.lettercase.org/get-the-booklet/.

3) MS Chapter of National Alliance on Mental Illness (NAMI) Basics Educational Course – Oct. 15, Jackson

Do you have a child or adolescent with issues such as austism, ADD, ADHD, schizophrenia, behavior disorder, borderline personality disorder, depression, or bipolar disorder? Would you like to learn more about caring for yourself, your family, and your child? NAMI Basics is a free six-week educational course for parents or caregivers of children and adolescents living with mental health issues sponsored by the Mississippi Chapter of NAMI. Classes will be held every Monday and Thursday evening beginning Oct., 15 and continuing until Nov. 1, at the Henley-Young Juvenile Justice Detention Center Conference Room at 940 East McDowell Road in Jackson. For additional information, call Reshanna Coleman at 601.899.9058 or 1.800.357.0388.

4) Financial Assistance Options for Adaptive Driving

“Americans love their wheels,” says guest blogger Chris Miller, in an article on Disability.Blog about the funding assistance available to purchase new adaptive vehicles or retrofit existing vehicles. Various government, state, and other programs are explained and web and telephone contact information provided. For the complete article, visit http://usodep.blogs.govdelivery.com/2012/09/26/adaptive-driving/.

5) Assistive Technology in Action

The Family Center of Technology and Disability and PACER Center are pleased to announce the release of their new assistive technology awareness series, “Assistive Technology in Action.” Funded by the U.S. Department of Education’s Office of Special Education Programs, this fully-captioned video series is designed to strengthen awareness of assistive technology (AT) devices that help individuals with disabilities participate fully in school, at home, and in the community. The first video in the series, “Meet Sam,” features Sam Graves, a young man with cerebral palsy who, with the help of AT, is a successful college student, blogger, and sportsman. To view the video, visit http://www.youtube.com/watch?v=jYmfrrY4Hfk.

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

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A new lease on life.......

New Lease on Life:

Coming to IDS as a social work intern I did not know what to expect. I was a little nervous and a bit uncomfortable because I have no experience in working with individuals with disabilities. Sure, I have been around those with disabilities in high school during a brief moment in class change, but I have never had that one on one interaction. My mindset was completely limited because I had never had the opportunity nor took the opportunity to get to know this particular population. There is truly a story behind every one's personal journey and it is rewarding to get to know those different from myself. I am learning new things everyday and I am not sure that I will ever know all that there is to know but I am more open. It's amazing how you can meet a total stranger for such a short period of time and they have this life-long impact on your life. I am so much more grateful and appreciative of the life that I have been blessed with. There are so many times in which we take the smallest things for granted when there are those in tougher situations. It is a blessing as well as a lesson to see those with disabilities who are happy just the way God created them because a lot of times, those who are "NORMAL" are whining over the petty things. I have learned that although we do not and will not always understand those different from us, we should still respect and accept them just the way they are.....no questions asked!

Sophia Jordan
BSW Student Intern

September 4, 2012

Inside this issue:

1) Mississippi CAN Beneficiary and Provider Workshops – Sept. 4 – Oct. 2

2) LIFE-MACE Gulf Coast Wheelchair Softball Clinic – Gulfport, Sept. 8

3) Resource for Tracking Health Care Reform Developments

4) SSI Compassionate Allowances List Is Expanding

5) Prepare for Medical Visits with This Resource

6) Preparing for Transition to Adulthood with Baby Steps

1) Mississippi CAN Beneficiary and Provider Workshops – Sept. 4 – Oct. 2

The Division of Medicaid, Coordinated Care, in conjunction with Magnolia Health Plan and UnitedHealthcare, will conduct separate Mississippi CAN workshops for both Medicaid beneficiaries and providers. Beneficiary workshops will begin Sept. 4 and will be held in 28 cities. Access a meeting schedule online at http://www.magnoliahealthplan.com/files/2012/08/Member-Workshop-Flyer.pdf.

Provider workshops will begin Sept. 5, and will be held in 12 locations. A meeting schedule is available online at http://www.magnoliahealthplan.com/files/2011/04/Provider-Flyer-final-completed-8-1-12-new-format.pdf.

2) LIFE-MACE Gulf Coast Wheelchair Softball Clinic – Gulfport, Sept. 8

Want to play wheelchair softball? Head to the Barksdale Pavilion of Jones Park in Gulfport at 805 20^th Ave. (on the beach at the intersection of Highway 90 and Highway 49) from 10 a.m. until 2 p.m. Sport wheelchairs will be provided along with lunch and refreshments. For more information, call Cindy Singletary at LIFE at 228.388.2401.

3) Resource for Tracking Health Care Reform Developments

Want to know the latest on Health Care Reform in your state? Health Care Reform Weekly is produced by KidsWell, a state and national advocacy and organizing campaign to ensure successful implementation of health care reform on behalf of children. The goal of the KidsWell campaign is to sustain a multi-tiered, highly coordinated network of national, state and local partners working collectively to represent the perspectives of children. This website, designed specifically to support child health advocates, serves as a tracking tool and central repository of state and federal health care reform implementation information. Visit the KidsWell site at http://www.kidswellcampaign.org/ and Health Care Reform Weekly at http://www.kidswellcampaign.org/Weekly-Update.

4) SSI Compassionate Allowances List Is Expanding

On August 13, the Social Security Administration expanded the list of conditions that qualify for Compassionate Allowances (CAL). CALs are a way to quickly identify conditions that meet disability standards. This can speed up the process for receiving Supplemental Security Income (SSI) to help support a child or other family member with one of these conditions. Find the list of CAL conditions at http://www.socialsecurity.gov/compassionateallowances/conditions.htm.

5) Prepare for Medical Visits with This Resource

Communication builds good relationships with doctors and other health care providers, and asking questions is an important way to participate in your own or your child’s health care. It can be a challenge to remember your questions when you’re in the office. One resource, the Question Builder tool from the U.S. Department of Health and Human Services, can help parents choose some common questions, prioritize them, and print them out to help you remember. For this resource, go to http://www.ahrq.gov/questions/qb/.

6) Preparing for Transition to Adulthood with Baby Steps

“Preparing our kids to become adult patients doesn’t have to be complicated,” said parent Cristin Lind in the summer issue of Newsline, a quarterly publication of the Federation for Children with Special Needs in Boston, Massachusetts. Lind’s article, “Preparing for Transition to Adulthood with Baby Steps (that Become Huge Milestones)! It Starts with YOU!,” details how she decided to begin preparing her children for medical transition to adulthood. Lind is a family leader with Mass Family Voices, a project of the Federation for Children with Special Needs. To see a copy of the summer issue of Newsline with Lind’s story on page 7, go to http://fcsn.org/newsline/v33n1/summer2012.pdf.

Lessons Learned!

Lessons Learned:

In December 2011, my mother was diagnosed with breast cancer in a late stage. This turned our lives around and upside down over night, especially my life, since my mother lives with me full time now. I have to be honest and say that I was not thrilled about this dramatic change in my life (becoming a caregiver to my mother, aside from caring for my two girls-one who has special health care needs and a disability-as a single parent). As much as I wanted to believe that her stay would be temporary, I knew it would be long term. It is almost nine months later and my mother still lives with me. What lessons have I learned:
1. Patience. My mother had a stroke on December 31, 2011. After this, she required more hands on than before; preparing her food, getting her bathed and dressed, and whatever else that she could not do on her own. Even though she has recovered remarkably, she still requires the same help because of issues with her left arm and some deficits related to the stroke.
2. Love. I knew that taking care of my mother would require more than patience. It required unconditional love. Now, this was a biggie for me. Because I have not shared that strong mother daughter bond that most young ladies experience. Biblically, I had to be obedient and take care of her.
3. Kindness. When you go through something like this, it forces you to become kind when all you want to do is scream. I am a very private person when it comes to my space and having so many people in and out on a daily basis has forced me to become kind when all I want is my privacy.
4. Humility. I get applauded all the time from coworkers or colleagues and some friends who say, I am amazed at how well you are handling this. You are remarkable is what they say. I don't do this to get cuddos from anyone. It is my God given responsibility.
5. Understanding. Understanding that when things like this occur, you can either run or face it. Everyday, I have to remind myself that the doctors were not expecting my mother to progress or to live this long. I understand that God is in control and that Man has no understanding when it comes to God's healing hands.

And most importantly, I learned that I can not CONTROL how my life is going to be. I never saw myself as my mother's caregiver. Being there for my daughter 24/7, yes, but not for my mother. Each and every day for the past nine months, I watch my mother fight for something that we all take for granted and that is LIFE. We complain about our jobs, when she would jump at the chance to work again. We complain about what we are going to eat, when at one time, she struggled to keep soup and crackers down. We complain about our physical appearance when she struggles to grow her hair back and prays that she can keep her breasts. Lessons Learned is to be grateful for who you have that will take care of you under any circumstances, to love you unconditional, and someone who will uplift your life instead of playing games to ruin it. My lessons learned keeps me fighting for my mother, it keeps me fighting for children's well being, it keeps me fighting to love unconditional with my family & friends, because one day, someone will have to do this for me.

Life, Love, & Happiness is not to be taken for granted.

Cookie

August 8, 2012

Family Health Notes is a monthly listserv for the families of children and youth with special health care needs (CYSHCN) and their health care providers.

Inside this issue:

1) Spotlight on Child Health Issues: Health Information Technology and Medical Home

2) Mississippi at Home: Opening Doors to Community-Based Support – Aug. 22, Jackson

3) Statewide Parent Advisory Council Meeting – Aug. 23, Jackson

4) The Back to School Basics of IDEA – Aug. 25, Biloxi

5) Mississippi CAN Workshops – Sept. 5–Oct. 2

6) TLC - Connecting People with Disabilities to Sports, Recreation in South Mississippi

7) Childhood Obesity

1) Spotlight on Child Health Issues: Health Information Technology and Medical Home

Produced by the National Center for Medical Home Implementation (NCMHI), this electronic publication provides medical home resources for children, youth and families. For more information, visit http://www.magnetmail.net/actions/email_web_version.cfm?recipient_id=639194604&message_id=2147647&user_id=AAPorg&group_id=471660&jobid=10798186

2) Mississippi at Home: Opening Doors to Community-Based Support – Aug. 22, Jackson

Mississippi at Home is a strategic effort by the Mississippi Division of Medicaid to bring balance to its long-term care system by increasing access to home- and community-based services. A kickoff meeting will be held Aug., 22, from 9 a.m. until 12 p.m. at the War Memorial Building at 120 South State Street in Jackson. To attend, RSVP to Molly Parker, project director, at molly.parker@medicaid.ms.gov or 601.359.9524 by Aug. 15.

3) Statewide Parent Advisory Council Meeting – Aug. 23, Jackson

The Statewide Parent Advisory Council of the MS State Department of Health’s Children’s Medical Program will meet on Aug. 23, from 10 a.m. to 12 p.m. in the Children’s Medical Program conference room on the third floor of the Jackson Medical Mall at 350 Woodrow Wilson Boulevard in Jackson. Leadership training will be conducted by Leslie Junkin of the Mississippi Parent Training and Information Center during the meeting. All families of and professionals working with children and youth with special health care needs are welcome to attend. For more information, call Jackie Washington at 1.888.313.1718 or email her at JacquelineWashingto@msdh.state.ms.us .

4) The Back to School Basics of IDEA – Aug. 25, Biloxi

Plan to attend Back to School Basic of IDEA Special Education Rights for Parents and Families on Sat., Aug. 25, from 2 to 4 p.m. at the LIFE office at 2030 Pass Road, Suite C, in Biloxi. Presented by LIFE of MS and MSPTI, this is a no-cost training. Spanish translation will be provided, and a sign language interpreter will be present. Refreshments will be served. For more information, email Cindy Singletary at csingletary.life@gmail.com or call her at 228.388.2401.

5) Mississippi CAN Beneficiary and Provider Workshops – Sept. 4 – Oct. 2

The Division of Medicaid, Coordinated Care, in conjunction with Magnolia Health Plan and UnitedHealthcare, will conduct separate Mississippi CAN workshops for Medicaid for beneficiaries and for providers from Sept. 4 through Oct. 2, across the state. Beneficiary workshops will begin Sept. 4 and will be held in 28 cities. Access a meeting schedule online at http://www.magnoliahealthplan.com/files/2012/08/Member-Workshop-Flyer.pdf . To save your space at a meeting, call 1-800-884-3222.

6) TLC - Connecting People with Disabilities to Sports, Recreation in South Mississippi

The Technology Learning Center (TLC) at Southern Miss Gulf Coast is launching “Project Slam Dunk: Connecting People with Sports” to give people with disabilities who live in remote areas of south Mississippi the opportunity to participate in recreational activities. TLC is promoting the adapted sports and recreational equipment they have available, as well as recruiting members to join the Southern Miss Golden Eagles wheelchair basketball team for the upcoming 2012-2013 season. For more information about the Southern Miss Technology Learning Center and its programs, call Ashley Flowers at 228-214-3400 or email her at Ashley.N.Ross@usm.edu .

7) Childhood Obesity

Over the past few decades, changes to our communities, neighborhoods and schools have made it difficult for children to eat a healthy diet and be active. Today, many families don't have access to affordable healthy foods or safe places for their kids to walk, bike and play. And in schools across the country, junk food and sugary drinks are widely available, while physical education has been squeezed out of the curriculum. For more information, visit http://www.rwjf.org/healthpolicy/childhoodobesity/index.jsp

August 6, 2012

Special Edition - Disability Partners Community Forums

Do you or a family member have a disability? Participate in this unique opportunity to have your voice heard by three different disability agencies. We want to know your needs, thoughts, and opinions —any age, any issue, any disability. Information and resources will be available.

Presented by the DD partner agencies—Disability Rights Mississippi, the Mississippi Council on Developmental Disabilities, and The University of Southern Mississippi Institute for Disability Studies—these forums are being held for the purpose of hearing from communities and meeting people face to face as we demonstrate a united stance on our goals and hope for the lives of individuals with disabilities in the state of Mississippi. A first session was held in Tunica on Aug. 2. Remaining sessions are:

MERIDIAN

August 9

1:30pm - 3:30pm

East MS Electric Power Assn. Auditorium

2128 Hwy. 39 North

NATCHEZ

August 15

1:30pm - 3:30pm

Copiah-Lincoln Community College Activity Room (next to cafeteria)

11 Co-Lin Circle

If you need more information, need transportation assistance, or have an accommodation request call 1-800-772-4057. Sign language interpreters will be present at each event. Each venue is accessible and has plenty of parking. These are free community events with snacks and beverages offered. Informational materials will be provided by each agency.

July 3, 2012

July 3, 2012
Inside this issue:
1) Free Emergency Preparedness Trainings in July
2) Journey Skyward with the Journey of Hope – July 14, Jackson
3) Gulf Coast Classic Wheelchair Tennis Tournament – July 19-20, Biloxi
4) MSPTI Basic Rights Boot Camp – July 26, Corinth
5) Helping Hands: A Family’s Guide to Early Intervention in Mississippi
6) Supreme Court Ruling on the Affordable Care Act –What’s Next for CYSHCN
1) Free Emergency Preparedness Trainings in July
If a member of your family has a disability, your family could be at risk during an emergency situation. Learn how to protect your family at free trainings provided by the Mississippi State Department of Health and the Mississippi Coalition for Citizens with Disabilities. Sessions to be held in July include:
                July 11 – Richton – Richton Library, 210 Front St., 10 a.m. to 1 p.m.
                July 17 – Pearl – Pearl Public Library, 3470 Highway 80 E., 10 a.m. to 1 p.m.
                July 19 – Fayette – Jefferson County Library, 218 S. Main St., 1 to 3 p.m.
                July 23 – Lucedale – George County Library, 507 Oak St., 10 a.m. to 1 p.m.
For more information or ADA accommodations, call Judy Sikes at 1.800.721.7255 or email her at judy@msccd.org.
2) Journey Skyward with the Journey of Hope – July 14, Jackson
Journey of Hope is a cross-country bicycle trek that began on the west coast and is peddling toward Washington D.C. to raise funds and awareness for people with disabilities. Come meet the Journey of Hope cyclists and take a spin as the co-pilot of an airplane on Sat., July 14, from 10 a.m. to 2 p.m. at John Bell Williams Field in Raymond. Flights are limited so if you want to fly, call Matt Nalker at The Arc of Mississippi at 601.982.1180 or Christy Dunaway at LIFE at 601.969.4009 as soon as possible. Journey Skyward is presented by The Arc of Mississippi, LIFE of Mississippi and Hinds Community College.
3) Gulf Coast Classic Wheelchair Tennis Tournament – July 19-20, Biloxi
Bring your racquet and join in the fun at the Gulf Coast Classic Wheelchair Tennis Tournament on Thurs., July 19 and Fri., July 20, at the Biloxi Tennis Complex at 765 Wells Drive in Biloxi. Registration is from 6 to 8 p.m. on Wed., July 18, and 7 to 8 a.m. on Thurs., July 19. Play begins at 8 a.m. on Thurs., July 19. For more information, call Cindy Singletary at LIFE at 228.341.3449 or email her at csingletary.life@gmail.com.
4) MSPTI Basic Rights Boot Camp – July 26, Corinth
Do you want to learn about your rights as a parent in the special education process? Do you want to learn more about IEPs? Plan to attend the MSPTI’s (Mississippi Parent Training and Information Center) Basic Rights Boot Camp on July 26, in Corinth from 12 to 2 p.m. at the MSU Extension Building at 2200 Levee Road. For more information, call Leslie Junkin, MSPTI training coordinator and parent advisor for northeast Mississippi, at 662.251.5599 or email her at leslie@mspti.org.

5) Helping Hands: A Family’s Guide to Early Intervention in Mississippi
The Mississippi Parent Training and Information Center in partnership with the Mississippi Department of Health's First Steps Early Intervention Program is excited to announce a new resource, "Helping Hands, A Family Guide to Early Intervention." This 40-page guide is intended to answer common questions about parent rights and regulations pertaining to the Early Intervention process. You can download the guide at http://www.mspti.org/upload/file127_EIGuide.pdf or contact MSPTI for printed versions by emailing your request to info@mspti.org.
6) Supreme Court Ruling on the Affordable Care Act –What’s Next for CYSHCN
Now that the U.S. Supreme Court has ruled that the Affordable Care Act is constitutional how can parents of children and youth with special health learn more about how this Act affects their children’s services. The Catalyst Center provides information of the Affordable Care Act on their website. For more information visit: http://www.hdwg.org/catalyst/?&utm_medium=email&utm_campaign=postwebinar2&utm_source=ACA+rulings&utm_campaign=ACA+ruling&utm_medium=email.

June 8, 2012

June 8, 2012
Inside this issue:
1) LIFE-MACE Inclusive Wheelchair Softball Clinic – June 16, Hattiesburg
2) Mississippi disAbility MegaConference – June 21-22, Jackson
3) MSPE Employment Awareness Sessions – June 21-22, Jackson
4) Citizens with Disabilities Can Get Free Lifetime National Parks Pass
5) FEMA Urges People to Prepare for Hurricanes and Severe Weather
1) LIFE-MACE Inclusive Wheelchair Softball Clinic – June 16, Hattiesburg
Come on out for a great summer day of softball and fun on Sat., June 16, from 10 a.m. until 2 p.m. in the parking lot of the Payne Center on The University of Southern Mississippi campus at 118 College Drive in Hattiesburg. Everyone is welcome to the clinic sponsored by LIFE (Living Independence for Everyone) and MACE (Metro Area Community Empowerment). For more information, call Cindy Singletary at LIFE at 228.388.2402.
2) Mississippi disAbility MegaConference – June 21-22, Jackson
The Mississippi disAbility MegaConference will bring together hundreds of individuals with disabilities, family members, and professionals to share best practices, provide training, and inspire innovation among attendees. There will be vendors from across the state, opportunities to earn continuing education units and continuing legal education credits, breakout sessions led by inclusive panels of speakers, incredible networking with individuals and professionals, a silent auction, exceptional door prizes, and an evening entertainment event. Stipends are available for families. For more information, call 1.800.772.4057 or visit http://megaconference.drms.ms/.

3) MSPE Employment Awareness Sessions – June 21-22, Jackson
Four awareness sessions on employment for youth and young adults with developmental and intellectual disabilities will be held on June 21-22 in Jackson. Youth and young adults with developmental and intellectual disabilities and their families, educators, business leaders, community leaders and elected officials are invited to participate in separate, targeted sessions. Scheduled awareness sessions and locations are:
                Mon., June 4 -   1 p.m., community leaders and elected officials – MS Library Commission
                                                5:30 p.m., youth with disabilities and their families – Jackson Marriott
                Tues., June 5 -   10 a.m., business leaders - MS Library Commission
                                                1 p.m., educators - MS Library Commission
The Mississippi Library Commission is located at 3881 Eastwood Drive at the Education and Research Center off Ridgewood Road and Eastover Drive. The Jackson Marriott is located at 200 East Amite Street. For more information on the awareness sessions, e-mail Dr. Jerry Alliston, Jerry.Alliston@usm.edu, or Alma Ellis, aellis@ihl.state.ms.us, at the Institute for Disability Studies.
4) Citizens with Disabilities Can Get Free Lifetime National Parks Pass
Did you know that U.S. citizens with documented disabilities can get a free lifetime pass to all national parks and recreation areas? The Access Pass is a free pass available to U.S. citizens or permanent residents of the U.S. who have been medically determined to have a permanent disability. The pass provides access to more than 2,000 recreation sites managed by five Federal agencies. A National Parks Pass usually costs $80 yearly. For more information, visit http://store.usgs.gov/pass/access.html.
5) FEMA Urges People to Prepare for Hurricanes and Severe Weather
Hurricane Season began June 1. The Federal Emergency Management Agency (FEMA) has a system that sends severe weather alerts to people on their cell phones. Wireless Emergency Alerts (WEAs) look like a text message, and will automatically appear on the mobile device screen showing the type and time of alert, along with any action that should be taken. Check with your cellular carrier to see if WEA alerts are available in your area. Read FEMA’s emergency preparedness tips for people with disabilities in English or Spanish. For more emergency preparedness tips and information about the importance of including people with disabilities in planning for emergencies and disasters and stories about preparing for emergencies, visit https://www.disability.gov/emergency_preparedness.
Preparedness tips in English: http://www.ready.gov/sites/default/files/documents/files/FEMA_Disabilities_R-6.pdf
Preparedness tips in Spanish: http://www.ready.gov/sites/default/files/documents/files/PrinterFriendly_DisabilitiesSpecialNeeds_ES.pdf

May 16, 2012 Special Edition (2)

Mississippi disAbility MegaConference
June 21-22
Marriott Jackson
Jackson, MS

Seventeen disability related agencies or groups have come together to plan and host Mississippi’s first MegaConference. The Mississippi disAbility MegaConference will bring together, at an affordable price, hundreds of individuals with disabilities, family members, and professionals to share best practices, provide training, and inspire innovation among attendees. There will be vendors from across the state, opportunities to earn continuing education units and continuing legal education credits, breakout sessions led by inclusive panels of speakers, incredible networking with individuals and professionals, a silent auction, exceptional door prizes, and an evening entertainment event that is sure to be a blast!
The link to the web-page and registration form is: http://megaconference.drms.ms/
For more information, call 1.800.772.4057.
The Facebook page link is: http://www.facebook.com/profile.php?id=100003766235007
Stipends are available. Call Judy at 601.969.0601 to inquire about the stipend process.
Call the Marriott at 601.969.5100 to reserve your room. Guest rooms are being offered at a special rate of $117 for a single or double. You must tell them you are with the MS disAbility Megaconference. Registration and room reservation DEADLINE is May 28, 2012.

May 16, 2012 Special Edition

Youth with Disabilities Employment Awareness Sessions Planned for Greenville

Four awareness sessions concerning employment for youth and young adults with developmental and intellectual disabilities will be held for Delta residents in Greenville on May 21-22.
Youth and young adults with developmental and intellectual disabilities and their families, educators, business leaders, community leaders and elected officials are invited to participate in separate, targeted sessions.
Scheduled awareness sessions are:
            Mon., May 21 -     1 p.m., community leaders and elected officials
                                                5:30 p.m., youth with disabilities and their families
            Tues., May 22 -     10 a.m., business leaders
                                                1 p.m., educators
All sessions will be held in the meeting room of the William Alexander Percy Memorial Library at 341 Main Street in Greenville.
Training session topics will include job development, customized employment, supported employment, federal laws and programs, environmental adaptations, person-centered planning services, and supports for employment of individuals with developmental and intellectual disabilities.
These awareness sessions are being held by the Mississippi Partnerships for Employment for Youth and Young Adults with Developmental and Intellectual Disabilities project developed by the Mississippi Council on Developmental Disabilities, Disability Rights Mississippi and The University of Southern Mississippi Institute for Disability Studies to increase competitive outcomes for youth and young adults with developmental and intellectual disabilities by enhancing the collaboration of existing state education and employment services systems.
This project is funded by a grant from the Administration on Developmental Disabilities. Mississippi was one of six states chosen from 42 applicants for these grant funds.
Awareness sessions are scheduled for Starkville on June 4-5 and Jackson on June 21-22.
For more information on the Mississippi Partnerships for Employment project and the awareness sessions, contact Jerry Alliston at the Institute for Disability Studies toll free at 1-888-671-0051 or by email at Jerry.Alliston@usm.edu.

May 2, 2012 Special Edition

Sessions Inform Gulf Coast Residents about Employment
for Youth with Developmental or Intellectual Disabilities

Four outreach/awareness sessions on employment for youth and young adults with developmental and intellectual disabilities will be held on the Gulf Coast on May 7-8. Youth and young adults with developmental and intellectual disabilities and their families, educators, business leaders, community leaders and elected officials are invited to participate in separate, targeted sessions.
Scheduled awareness sessions are:
                Mon., May 7 -    10 a.m., community leaders and elected officials
                                                5:30 p.m., youth with disabilities and their families
                Tues., May 8 -    10 a.m., business leaders
                                                1 p.m., educators
All sessions will be held at the Technology Learning Center on The University of Southern Mississippi Gulf Park campus at 730 East Beach Boulevard in Long Beach.
Training session topics will include job development, customized employment, supported employment, federal laws and programs, environmental adaptations, person-centered planning services, and supports for employment of individuals with disabilities.
These awareness sessions are being held by the Mississippi Partnerships for Employment for Youth and Young Adults with Developmental and Intellectual Disabilities project developed by the Mississippi Council on Developmental Disabilities, The University of Southern Mississippi Institute for Disability Studies and Disability Rights Mississippi to increase competitive outcomes for youth and young adults with developmental and intellectual disabilities by enhancing the collaboration of existing state education and employment services systems. This project is funded by a grant from the Administration on Developmental Disabilities. Mississippi was one of six states chosen from 42 applicants for these grant funds
For more information on the Mississ

May 2, 2012

May 2, 2012
Inside this issue:
1) Family Fun Day – May 5, Hattiesburg
2) A Case for Youth Leadership Webinar – May 8, 1 p.m. CDT
3) Be Your Best Treasure Quest – May 12, Jackson
4) Inclusive (Indoor) Camping Trip for Youth and Young Adults with Disabilities – June 8-9, Long Beach
5) Summer Jobs Plus Bank
6) Improve Transportation for People with Disabilities
7) HHS and Education Launch StopBullying.gov
8) One Question
1) Family Fun Day – May 5, Hattiesburg
Save the date: Sat., May 5, from 10 a.m. to 1 p.m. for the 3rd Annual Family Fun Day at Kamper Park in Hattiesburg. Expect food, fun, games, music and prizes. Family Fun Day is presented by CommUNITY Cares. The theme for the day is The Future’s So Bright, Celebrating Children’s Mental Health Awareness. For more information, call CommUNITY Cares at 601.544.4641.
2) A Case for Youth Leadership Webinar – May 8, 1 p.m. CDT
Young people have been at the heart of every social justice movement. Register for this webinar to learn more about youth leadership in the Disability Rights Movement! Join Cindy Singletary and Stacey Milbern in this engaging presentation as they discuss youth leadership and how you can be an ally to youth with disabilities. These two youth experts will share the philosophy, various models and best practices in the youth leadership development field. Both speakers bring spark, passion and years of experience to the conversation so reserve your seat today! https://cc.readytalk.com/r/r27l2e6223wj
3) Be Your Best Treasure Quest – May 12, Jackson
Be Your Best Treasure Quest, a mental health awareness event, will provide a scavenger hunt for children of all ages to celebrate positive wellness in youth. Treasure Quest will be held on Sat., May 12 from 10 a.m. to 1 p.m. at Fondren Park, at the corner of Northview Drive and Dunbar Street in Jackson, by the Mississippi Transitional Outreach Project. The event will include free food, space jumps, obstacle courses and more. The Quest is co-sponsored by The Arc of Mississippi, the City of Jackson Catholic Charities, the Mississippi Department of Mental Health, the Mississippi Department of Human Services, the Greater Bethlehem Temple Church, Hinds Behavioral Health Services, the Mississippi Department of Education, Youth Engagement Solutions, NAMI Mississippi, NFUSION, Mississippi Families as Allies for Children’s Mental Health, and the Fondren Renaissance Foundation. Mississippi Transitional Outreach Project is funded through a grant from the Substance Abuse and Mental Health Services Administration in partnership with the Mississippi Department of Mental Health.
4) Inclusive (Indoor) Camping Trip for Youth and Young Adults with Disabilities – June 8-9, Long Beach
An inclusive, indoor camping trip for youth and young adults with disabilities will be held, Fri. afternoon, Jun. 8 through Sat. afternoon, Jun. 9 at the Technology Learning Center on the Gulf Park campus of The University of Southern Mississippi at 730 East Beach Boulevard in Long Beach. Activities include pottery, games, a cookout and more. For more information, call Jerry Alliston at the Institute for Disability Studies at 1.888.671.0051 (TTY) or e-mail him at jerry.alliston@usm.edu.
5) Summer Jobs Plus Bank
The U.S. Department of Labor recently opened the Summer Jobs Plus Bank, an online resource for young people to find jobs, internships, mentorships and training opportunities. Companies can list summer job opportunities through a three-step process. The bank is part of the federal Summer Jobs Plus Initiative, which asks businesses, nonprofits and government leaders to come together to provide 250,000 employment opportunities for low-income and disconnected youth this summer. The initiative has been supported by the Forum for Youth Investment along with Ready by 21 National Partners, such as SparkAction, Corporate Voice for Working Families and America's Promise Alliance. For more information, visit http://www.dol.gov/summerjobs/.
6) Improve Transportation for People with Disabilities
The Disability Rights Education & Defense Fund ( DREDF) is conducting research on what factors are most important to riders with disabilities when deciding which transit mode to use. The confidential survey results will be part of a national study called Transit Cooperative Research Project B-40: Strategy Guide to Enable and Promote the Use of Fixed-Route Transit by People with Disabilities. The goal is to develop strategies to improve bus and train systems for people with disabilities. DREDF's research partners are TranSystems Corporation, The Collaborative, and KFH Group. Please take the survey (http://www.surveygizmo.com/s3/882523/TransitChoices ) and encourage others to do so.
7) HHS and Education Launch StopBullying.gov
The U.S. Departments of Health and Human Services and Education have launched a redesigned Stop Bullying website to encourage children, parents, teachers and communities to take action. The website includes a section dedicated to youth with disabilities and special health needs. The website also has a map with information on state laws and policies and videos for young people, along with practical strategies for schools and communities to make sure that environments are safe, as well as suggestions for parents and information on the dangers of cyber-bullying. Visit http://www.stopbullying.gov/at-risk/groups/special-needs/index.html
8) One Question
“If you could change one thing about yourself, what would you change?” was the question asked of 35 individuals with developmental disabilities from different backgrounds. Their answers are shared in a seven and a half minute documentary at Sproutflix.org. You can watch it for free. Don’t miss it. It just may make your day and week and more. http://sproutflix.org/content/one-question

April 2, 2012

April 2, 2012
Inside this issue:
1) Stride Across the Spectrum 5K Run/Walk and Fun Run – Apr. 13, Hattiesburg
2) LIFE-MACE Inclusive Wheelchair Tennis Clinic – Apr. 21, Hattiesburg
3) Marriage Retreat for Couples Raising a Child with Special Needs – Apr. 21-22, Chattanooga, TN
4) Finding Your Way in the Health Care System
5) Understanding the Affordable Care Act
6) Family Fun Day – May 5, Hattiesburg
7) Camp Dream Street
1) Stride Across the Spectrum 5K Run/Walk and Fun Run – Apr. 13, Hattiesburg
The Institute for Disability Studies is sponsoring the first Stride Across the Spectrum 5K run and walk and one-mile fun run on Fri., Apr. 13, at the Longleaf Trail at 2895 W. Fourth Street in Hattiesburg. Registration is from 4:15 to 5:15 p.m., the one-mile fun run is at 5:30 p.m. and the 5K run/walk is at 6 p.m. The race day registration fees, which include a tee shirt, are $25 for individuals, $20 for Pine Belt Pacers, and $10 for the one-mile fun run. All proceeds will benefit the Stride Across the Spectrum Community Fund which provides financial assistance to individuals and families of individuals with Autism Spectrum Disorder. For more information or a printable order form, visit www.usm.edu/ids or call Beth Bruton at 601.266.5163.
2) LIFE-MACE Inclusive Wheelchair Tennis Clinic – Apr. 21, Hattiesburg
Plan for a fun day of tennis on Sat., Apr. 21, from 10 a.m. to 2 p.m. at the Tatum Park Courts at 101 Parkway Drive in Hattiesburg sponsored by LIFE, MACE (Metro Area Community Empowerment) and the Institute for Disability Studies. TRIAD AmeriCorp members will be assisting. Any disability is welcome. Wheelchairs and racquets will be provided, and lunch and refreshments will be served. For more information, call Cindy Singletary at LIFE at 228.388.2401.
3) Marriage Retreat for Couples Raising a Child with Special Needs – Apr. 21-22, Chattanooga, TN
The Two-gether marriage retreat will be held Sat., Apr. 21- Sun., Apr. 22, at the historic Chattanooga Choo Choo in Chattanooga, TN. This retreat is specially designed to discuss the unique challenges faced by couples raising a child with special needs. Hear from speakers who “get it” and understand the strains and stresses that can come when you have a special child. For more information visit http://www.risingaboveministries.info/national-ministries/two-gether .
4) Finding Your Way in the Health Care System
From the flu to broken bones, illnesses and medical emergencies seem to be an inevitable part of raising kids. It can be stressful any time your child needs medical attention, but even more so when you’re worried about where to get that care and how much it will cost. Visit this website for information on how to better navigate the health care system for your child: http://kidshealth.org/parent/system/doctor/healthcare.html#cat173 .
5) Understanding the Affordable Care Act
Trying to better understand the Affordable Care Act and how it affects your child with special health care needs? These fact sheets, one from the U.S. Department of Health and Human Services website and the other, including a Spanish version, from the website HealthCare.gov., explain what you need to know about the Act. Visit http://www.hhs.gov/od/affordable_care_act.html , http://www.healthcare.gov/news/brochures/people-with-disabilities-top5.pdf, or http://www.healthcare.gov/news/brochures/people-with-disabilities-top5-spanish.pdf .
6) Family Fun Day – May 5, Hattiesburg
Save the date: Sat., May 5, from 10 a.m. to 1 p.m. for the 3rd Annual Family Fun Day at Kamper Park in Hattiesburg. Expect food, fun, games, music and prizes. Family Fun Day is presented by CommUNITY Cares. The theme for the day is The Future’s So Bright, Celebrating Children’s Mental Health Awareness. For more information, call CommUNITY Cares at 601.544.4641.
7) Camp Dream Street
Dream Street is a five-day, four-night camping program for children with physical disabilities. The camp is held on the grounds of the Henry S. Jacobs Camp in Utica, MS. Dream Street will be held May 29 through June 2, 2012. Dream Street accepts approximately 60 children ages 8 to 14 each summer for fun-filled days of arts and crafts, horseback riding, music, fishing and canoeing, athletics, outdoor adventure, science and swimming. Applications are now available. For more information, visit http://www.dreamstreetms.org/campdreamstreetms.php or e-mail Cynthia Huff at cynthia@dreamstreetms.org .