1 Quarterly Informer

Quarterly Inf rmer

2017 Edi t ion - January, February, and March

Who we Are …What we Do!

Susan Riehn

Director

Cynthia Brown

Bookkeeper

Wallace Johnson Transition Facilitator

Mylinda Elliott

Program Manager, LaCAN

Leader & Senior Education Coordinator

Beryl Cook

Education Coordinator

Davelyn Patrick

CSHS Parent Liaison

China Guillory

Early Steps COS

Carla Chenier

ImCAL DD Facilitator

Nicole Jones I&R/Clerical Assistant

FHF SWLA Board of

Directors

Chair Bernadette Courville

Vice Chair Leslie Knox

Secretary Cynthia Tomlinson

Treasurer Leah Fuselier

Mona Timpa

Molly Morgan

Howard Foreman

Elaine Harmon

Kimberlee Gazzolo

Khaja Moinuddin

FHF SWLA Celebrates 25 Years serving individuals with disabilities and their families!!!

On January 2, 1992 Families Helping Families of Southwest Louisiana was incorporated as a 501 ©3 (nonprofit) agency so this year we are celebrating our 25th Anniversary!

Families Helping Families (FHF) was born from Act 378 (Community & Family Support Act) and a dedicated group of parents across the state. FHF SWLA has grown from a 10 x 12 donated office space in the regional public health office with 1 paid staff member to a 3000 sq. ft. building that we own with 18 staff members both in our region and across the state. Our programs serve families of infants and toddlers with disabilities just beginning

their journey to adults with disabilities.

I am honored that I have been able to grow with FHF SWLA over the 25 years working in many of the programs to becoming the Executive Director in 2003. I am also honored to have worked with strong mentors along the way such as Diane Fruge (Hazlewood), who was the founder and first director of FHF SWLA, along with early Board members made

the purchase of our current building possible. We are also sincerely thankful to our generous donors over the first 25 years, especially Ronny Lovett from R&R Construction who made the expansion of our office space possible with a very large donation. R&R has continued to support FHF each year by sponsoring our golf tournament and community

Christmas Party. We also appreciate our relationships with many other local agencies that we collaborate with daily to serve the community. We are very thankful for our Board

members who work very hard to make sure our agency is making a difference in the lives of individuals with disabilities and their families.

Thank YOU for supporting our agency throughout the years and we look forward to another 25 years of providing information, education and peer support to those in our five

parish area. Stay tuned for news of 25th anniversary! celebration! Susan

Many thanks to Ronny Lovett & R&R Construction for their donation to FHF SWLA!!!

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Martin Luther King, Jr. Festival January 13-16 “The Martin Luther King, Jr. Festival honors the courageous effort and sacrifices of Martin Luther King, Jr. The festivities kick off with a memorial breakfast, held at Glad Tidings Church, 3400 Texas Street on Friday, Jan. 13, at 7:30 a.m. which honors outstanding individuals in the community. This year’s guest speaker will be Lake Charles native, the Honorable Judge Ron Ware of the 14th Judicial District Court.” For more information please visit: http://www.kzwafm.com/local/

Pictures from the FHF 2016Annual Community Christmas Party!!!

http://www.kzwafm.com/local/

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Office for Citizens with Developmental Disabilities to Screen Individuals to Better Determine Needs

Screenings will assist individuals on waiting list in finding available services in the community

November 02, 2016

In order to better determine the level of services needed by Louisiana residents with developmental disabilities, the Louisiana Department of Health Office for Citizens with Developmental Disabilities (OCDD) will soon conduct individualized screenings for those who have applied for home and community-based waiver services and are on the agency’s waiting list.

Today, more than 9,500 people receive services under the New Opportunities Waiver, or NOW. There are another 14,000 people on the waiting list that is formally called the Request for Services Registry for the waiver. The screenings are now underway and will continue through May 30, 2017.

“This screening initiative will set the foundation for a comprehensive plan to understand and address the needs of individuals and family members who have been waiting for services for a long time,” said Louisiana Department of Health Deputy Secretary Michelle Alletto. “When the screening process is complete, the department will evaluate the data and consider policy changes so we can best meet the needs of citizens with developmental disabilities in our state.”

Purpose of the Screening

The screening will allow professionals to better understand the needs of each individual who is on the waiting list, and make referrals to other available services, where available and if needed. Accepting other services will not change a person’s registry status. The screenings will provide OCDD with a more accurate understanding of the level of need for those who have requested community-based services under the NOW waiver.

Individuals on the waiting list will be contacted by a screening representative who will schedule a time to meet and conduct the formal screening, called the Screening for Urgency of Need (SUN). The screening visit is expected to take approximately two hours. It is important that individuals complete the screening. Individuals who decline screening will be listed as having no unmet needs. Screenings will be conducted in the individuals’ homes at times that work best.

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Continued-Office for Citizens with Developmental Disabilities to Screen Individuals to Better Determine Needs

During the screening, individuals can expect to talk with a screening representative about their needs, types of existing formal and informal supports/services they currently receive, types of supports/services they need but do not currently receive, and the urgency of their needs. After the screening process, appropriate referrals will be made to the regional Human Services District/Authority or other governmental agency.

“OCDD has been working in collaboration with recipients, families, advocates and stakeholders to improve services and better understand the needs of those we serve,” said OCDD Assistant Secretary Mark A. Thomas. “It is important for individuals to participate in this screening so they can maintain their spot on the request for services registry and so we can know what their needs are and continue to guide them to other available resources.”

How the Waiver Services Registry Works

Currently, individuals can make a formal request for services and then be added to the Registry. There is no requirement to demonstrate a level of need when making an initial request. It is only when a person’s name makes it to the top that an individualized assessment is conducted.

A person advances in line on the Registry when additional NOW waivers (known as slots) are funded and a person at the top of the list accepts a NOW slot. Funding for additional slots are at the discretion of the Legislature and, for example, no additional slots were funded for the current fiscal year.

OCDD, in partnership with regional Human Services Districts and Authorities, support coordination agencies and other agencies that serve people with developmental disabilities, will conduct the screenings using a standardized instrument.

Sandee Winchell, executive director for the Louisiana Developmental Disabilities Council, said the screenings will provide valuable information on the type and urgency of needs of those waiting for services. “This data will allow the state to project the dollar amount necessary to meet the needs of these individuals and direct resources to where they are most needed,” she said.

The Louisiana Department of Health strives to protect and promote health statewide and to ensure access to medical, preventive and rehabilitative services for all state residents. To learn more about LDH, visit www.ldh.la.gov. For up-to-date health information, news and emergency updates, follow LDH's Twitter account and Facebook.

http://new.dhh.louisiana.gov/https://twitter.com/LADeptHealthhttps://www.facebook.com/LaDeptHealth/

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The Next Lake Area People First Meeting is

Saturday, January 21, 2017 from 1:30 pm to 3 pm

at the Families Helping Families

of Southwest Louisiana 2927 Hodges St.

Lake Charles, LA 70601

Come Learn about People First and What People First is doing in our

State concerning

Advocacy and Self-Advocacy for People with Disabilities!

People First is an organization run by people with disabilities for

people with disabilities.

For more information contact

Wallace Johnson 337-436-2570

Children’s Special

Health Services

Outback steakhouse in Lake Charles

allowed Families Helping Families

and Children’s Special Health

Services to participate in an event

that provided donated toys to our

December Clinics. Thank you to our

Lake Charles Outback, their patrons!

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Fami l ies Help i

ng

Fami l ies

Support &

Informat ion G

roup

Come and join staff members from Families Helping Families to meet new friends and form a support circle for those times when you need to know

someone who has “been there, done that!!”

Register to Attend (337) 436-2570 ♦ 1-800-894-6558 or Email: info@fhfswla.org

FUTURE SUPPORT GROUP MEETING DATES: Thursday, February 16 and March 23

Thursday, January 19, 2017 5:30 pm – 6:30 pm

Presenters:

Barbara Guillory & Cynthia

Nero

“People with Autism, ODD, Bi-Polar, PTSD,

etc. may be on target academically or even

excel academically but their disability may

affect their ability to be in school or stay in

school.”

“Students with disabilities like Asperger’s

may have a lack of adaptive or functional

skills that may qualify them for LAA1 even if

they excel academically. They need other

supports.”

mailto:info@fhfswla.org

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RSVP with China Guillory at 337-436-2570 Fax 337-436-2578 Or 1-800-894-6558 cfguillory@fhfswla.org

Light Supper and DOOR PRIZES

provided!

Join us to get more Information about Early Steps Transition.

China Guillory–Community Outreach Specialist will walk you through the process of

Transition from Early Steps into the School System

The next EarlySteps Regional Interagency Coordinating Council (RICC) meeting will be held on:

January 26, 2017 11:30 am - 1:30 pm

Calcasieu Parish Health Unit Auditorium

3236 Kirkman St.

Lake Charles, La. 70601

(the corner of Kirkman and Prien Lake Road)

Early Steps would like to invite you to participate in the Regional Interagency Coordinating Council (RICC) to discuss early intervention strategies for the Southwest Louisiana Region.

All family members are invited to attend, including providers, and other early intervention personnel.

mailto:cfguillory@fhfswla.org

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From the article

Focus on reducing your stress levels for 2017

Co-Authored by Lawrence Robinson, Melinda Smith, M.A., and Robert Segal, M.A.

Last updated: December 2016.

You may feel there’s nothing you can do about stress. The bills won’t stop coming, there will never

be more hours in the day, and your work and family responsibilities will always be demanding. But

you have a lot more control than you might think. Stress management is all about taking charge: of

your lifestyle, thoughts, emotions, and the way you deal with problems. No matter how stressful your

life seems, there are steps you can take to relieve the pressure and regain control.

What you can do

1. Move your body frequently—don't sit for more than an hour

2. Make positive face-to-face connection with other people a priority

3. When you can't change the stressor, learn to avoid, alter, adapt, or accept

4. Reduce your intake of alcohol, nicotine, and caffeine

5. Do something you enjoy every day

6. Get all the restful sleep that you need to feel your best

7. Learn more by reading the related articles

What are the Best Tips For Managing Stress? What creates disabling stress in one person, may not have the same affect on another.

Tip 1: Identify habits and behaviors that add to stress

Tip 2: Replace unhealthy coping strategies with healthy ones

Tip 3: Get moving

Tip 4: Connect to others

Tip 5: Practice the 4 A's

Avoid, Alter, Adapt, Accept

Tip 6: Make time for fun and relaxation

Tip 7: Maintain balance with a healthy lifestyle

To read the full article, please visit

https://www.helpguide.org/articles/stress/stress-management.htm

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Presented by Louisiana Council for Exceptional Children

January 30 – 31, 2017

Cajundome Convention Center

444 Cajundome Blvd

Lafayette, LA 70506

2017 Super Conference Preliminary Program

http://bit.ly/2gQiVx5

Louisiana Council for Exceptional Children

http://community.cec.sped.org/la/home

“To the Classroom and Beyond!” 36th Annual Super Conference on

Special Education Louisiana Council for Exceptional Children

Children’s Special

Health Services

Some of our adorable Christmas Cart

recipients

http://bit.ly/2gQiVx5http://community.cec.sped.org/la/home

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For More Information or to

register visit,

http://fasdconf.advocacyla.org/

A list of the Top 20 Special Needs

Resource Posts of 2016

The Top 20 most-viewed resource posts of the year are from the Friendship Circle blog - from a

post put together and written by Terri Mauro. Terri Mauro is the blog manager for

Friendship Circle.

1. 13 Chromosomal Disorders You May Not Have Heard Of

2. 10 Ways to Promote Your Child’s Cognitive Development

3. Top Ten Most Ridiculous Comments Heard at an IEP Meeting

4. Weighted Blankets: 13 Stores to Choose From

5. 6 Facts about Fecal Smearing That You Need to Know

6. The Top 10 Challenges of Special Education Teachers

7. 8 Online Stores to Purchase Sensory Friendly Clothing

8. 5 Tax Deductions and Credits For Special Needs Families

9. 10 Awesome Reasons Why Being a Speech Pathologist Rocks

10. 8 Important Tips for Working with a Special Needs Child

11. 10 Special Needs Organizations You Should Know About

12. Spotlight: 10 Colleges with Programs for ASD Students

13. 55 Easy Items to Include in a Sensory Table at Home or School

14. 3 Benefits of Playing Pokémon Go for Individ-uals with Autism

15. GPS Smartsole Gives Peace of Mind to Par-ents of Wanderers

For all 20 and the whole article, go to https://t.co/gQPPHtzCHR

http://fasdconf.advocacyla.org/http://www.friendshipcircle.org/blog/http://www.friendshipcircle.org/blog/2012/05/22/13-chromosomal-disorders-youve-never-heard-of/http://www.friendshipcircle.org/blog/2012/05/22/13-chromosomal-disorders-youve-never-heard-of/http://www.friendshipcircle.org/blog/2014/06/09/10-ways-to-promote-your-childs-cognitive-development/http://www.friendshipcircle.org/blog/2014/06/09/10-ways-to-promote-your-childs-cognitive-development/http://www.friendshipcircle.org/blog/2012/01/19/top-ten-most-ridiculous-comments-heard-at-an-iep-meeting/http://www.friendshipcircle.org/blog/2012/01/19/top-ten-most-ridiculous-comments-heard-at-an-iep-meeting/http://www.friendshipcircle.org/blog/2012/02/13/weighted-blankets-13-stores-to-choose-from/http://www.friendshipcircle.org/blog/2015/04/27/6-facts-about-fecal-smearing-that-you-need-to-know/http://www.friendshipcircle.org/blog/2015/04/27/6-facts-about-fecal-smearing-that-you-need-to-know/http://www.friendshipcircle.org/blog/2012/02/01/the-top-10-challenges-of-special-education-teachers/http://www.friendshipcircle.org/blog/2012/02/01/the-top-10-challenges-of-special-education-teachers/http://www.friendshipcircle.org/blog/2013/01/21/8-online-stores-to-purchase-sensory-friendly-clothing/http://www.friendshipcircle.org/blog/2013/01/21/8-online-stores-to-purchase-sensory-friendly-clothing/http://www.friendshipcircle.org/blog/2012/10/10/5-tax-deductions-credits-for-special-needs-families/http://www.friendshipcircle.org/blog/2012/10/10/5-tax-deductions-credits-for-special-needs-families/http://www.friendshipcircle.org/blog/2014/01/30/10-awesome-reasons-why-being-a-speech-pathologist-rocks/http://www.friendshipcircle.org/blog/2014/01/30/10-awesome-reasons-why-being-a-speech-pathologist-rocks/http://www.friendshipcircle.org/blog/2012/10/15/8-important-tips-for-working-with-a-special-needs-child/http://www.friendshipcircle.org/blog/2012/10/15/8-important-tips-for-working-with-a-special-needs-child/http://www.friendshipcircle.org/blog/2016/01/14/10-special-needs-organizations-you-should-know-about/http://www.friendshipcircle.org/blog/2016/01/14/10-special-needs-organizations-you-should-know-about/http://www.friendshipcircle.org/blog/2016/07/22/spotlight-10-colleges-with-programs-for-asd-students/http://www.friendshipcircle.org/blog/2016/07/22/spotlight-10-colleges-with-programs-for-asd-students/http://www.friendshipcircle.org/blog/2016/01/05/21-items-to-include-in-a-sensory-table/http://www.friendshipcircle.org/blog/2016/01/05/21-items-to-include-in-a-sensory-table/http://www.friendshipcircle.org/blog/2016/07/21/5-benefits-playing-pokemon-go-autistic/http://www.friendshipcircle.org/blog/2016/07/21/5-benefits-playing-pokemon-go-autistic/http://www.friendshipcircle.org/blog/2016/01/19/gps-smartsole-gives-peace-of-mind-to-parents-of-wanderers/http://www.friendshipcircle.org/blog/2016/01/19/gps-smartsole-gives-peace-of-mind-to-parents-of-wanderers/https://t.co/gQPPHtzCHR

11 Quarterly Informer

Waiver

Registry Dates

The following dates have been

reached on the waiver registry,

a.k.a. the waiting list.

New Opportunities Waiver

(NOW)

August 18, 2004

Children’s Choice Waiver

June 20, 2006

Supports Waiver

December 31, 2014

Not sure where you are on the registry?

Call 1-800-364-7828

Verified with Statistical Resources 01/04/2017

12 Quarterly Informer

My name is Ronald Bonnette, Sr and I live in Jefferson Davis Parish. Several years ago Wallace Johnson from Families Helping Families of Southwest Louisiana invited me to a workshop in Jennings, LA at Shoney’s Restaurant. Wallace had been trying to get me to attend different workshops and things at FHF for many years and I never would go. I finally gave in and went because the meal was free and to get him to stop bugging me. While at the workshop I heard from Paul LeJeune of Louisiana Rehabilitation Services. He agreed to meet with me right after the workshop. He said he could help me and my son get a job since me and my son both have disabilities. Mr. LeJeune asked me if I wanted to go back to

school to further my education and I told him no, I was not interested in going back to school. Mr. LeJeune said that Louisiana Rehabilitation Services could help me find a job. He said we can help you with a job doing lawn service. I told him that this would never work since I have a back injury and I am not able to do the work because of it. He asked me if I wanted to start my own business to think about it and then get back with him. I did. I contacted him later and told him what kind of work experience I had as a truck driver and I was interested in starting my own business as an Oversized Load Truck Escort Service. Louisiana Rehabilitation Services gave me all the equipment and tools I needed to have my truck outfitted for oversized load truck escort service. Thanks to Families Helping Families and Louisiana Rehabilitation Services I now have my own business doing oversized load truck escort services. Help from Families Helping Families gave me my life and my family back. Before contacting Families Helping Families it was terrible. I was depressed and I felt like life was over because I could not work. I did not know the help that was out there to help me and my family. After connecting with FHF I have received a lot of good information, peer support, and advocacy assistance. FHF helped me with my son’s IEPs and his education too. FHF is there for me and my family. My life started coming back since I met FHF. Through them I received the opportunity to start my own business because FHF put me in touch with the right people who could make it happen. I started feeling worthy again since returning to work. FHF gave me hope when I did not have hope. It would devastate me and my family if FHF had to close its doors or limit its services because FHF has been there for us. Without FHF I would not have the information or tools needed to help me and my family. FHF has changed our family’s outlook. FHF gave our family relief. If FHF closed we would lose our connection to resources. There would be no one to help or guide us in the right direction. There is no other avenue to go to that does what FHF does. Thank you Families Helping Families for giving me and my family hope and a future!

Ronald Bonnette, Sr and family, Jeff Davis Parish

http://chirblog.org/embedded-deductibles-and-how-they-work/

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Thursday, February 16, 2017 10:00 AM - 11:30 AM - FHF Conference Room

Join Us For Coffee and Conversation!!

Our guests will be James Lewis and Program

Supervisors from Imperial Calcasieu Human Services Authority-Developmental

Disabilities Division Office.

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mailto:Brenton.Andrus@la.gov

15 Quarterly Informer

Spread The Word

To End The Word

event coming

some time in

March!

Benetech Delivers 10 Million Accessible Ebooks By Sara Gebhardt posted in Benetech, Global Literacy, Press Releases on September 20, 2016 at 1:47pm

Benetech’s Bookshare technology makes reading possible for over 425,000 individuals unable to read standard print

Empowers students and adults to succeed in school, work and social inclusion

Benetech, the leading nonprofit empowering communities in need by creating scalable technology solutions, today announced that over 10 million accessible ebooks have been downloaded through its Bookshare initiative.

Bookshare is the world’s largest online library for people who are blind, visually impaired or have a physical disability that interferes with reading, such as dyslexia. Through its extensive collection of educational and popular titles, specialized book formats, and reading tools, Bookshare offers individuals who cannot read standard print materials the same ease of access that people without disabilities enjoy.

In 2007 and 2012, Bookshare received two five-year awards from the U.S. Department of Education, Office of Special Education Programs (OSEP), to provide free access for all U.S. students with a qualifying print disability. Bookshare is an initiative of Benetech, a Palo Alto, CA-based nonprofit that develops and uses technology to create positive social change. www.bookshare.org.

Benetech works with over 820 publishers to collect new releases and existing books that are currently unavailable to individuals who cannot read standard print. Bookshare’s technology converts the digital files to accessible formats, including braille, audio, highlighted text and large-font text. Over 425,000 Bookshare members in 70 countries access the growing list of 460,000 titles made available by this technology. The Bookshare library is free for all U.S. students with qualifying print disabilities.

“Access to information is a basic human right,” said Jim Fruchterman, founder and CEO of Benetech. “Our Bookshare initiative is focused on using technology to make sure individuals who are unable to read standard print can exercise that right. Today’s milestone is a celebration of what is possible when technology is used for social good.”

http://www.r-word.org/http://www.benetech.org/2016/09/20/benetech-delivers-10-million-accessible-ebooks/http://www.benetech.orghttps://www.bookshare.orghttps://www2.ed.gov/about/offices/list/osers/osep/index.htmlhttps://www.bookshare.orghttps://www.bookshare.org/cms/bookshare-me/who-qualifies

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Early Steps Presents:

A Family Orientation Workshop

Tuesday, February 21, 2017 10 AM - 12 PM

2927 Hodges St. Lake Charles, LA 70601

These topics and more will be covered:

What is EarlySteps?

What are my roles and

responsibilities?

What are my rights as a parent?

What is an IFSP and how can I be

more involved in the planning

process?

Who do I contact if I have a concern?

RSVP with China Guillory at

337-436-2570 or 1-800-894-6558

Email: cfguillory@fhfswla.org

I am looking forward to meeting you!

China Guillory, EarlySteps Community Outreach Specialist

Families Helping Families

of SWLA

PRESENTS

4th Annual Family Fun 4th Annual Family Fun

DayDay

April 8, 2017April 8, 2017 10 am 10 am —— 2 pm2 pm

VFW Post 7321 in Moss Bluff— 2668 Hwy 171 North

(next to the blue water tower)

Come celebrate Spring and the abilities of ALL

individuals with FHF!! We will have food, fun, games,

music and information!

Registration flyer coming soon! If your agency or group provides services

to those with disabilities in our area and you want to participate please email

info@fhfswla.org or call (337) 436-2570. Agencies will be asked to

provide a fun activity for all attending!

mailto:cfguillory@fhfswla.orgmailto:info@fhfswla.org

17 Quarterly Informer

Parent Center Brief on School Resource Officers Read the brief online at the Hub and download it in PDF or word.

http://www.parentcenterhub.org/repository/brief-school-resource-officers/

Sunday,

March 12, 2017

The Center for Parent Information and Resources is pleased to offer Parent Centers a brand-new brief on the

use of sworn law-enforcement officers in public schools as part of building a safe learning environment for students. The brief is designed to accompany and elaborate upon

OSEP’s Dear Colleague Letter on the Use of School Resource Officers (SROs) in Schools, released September 8, 2016. Appropriate duties of SROs are discussed, as are

current statistics on the use of SROs, the concerns expressed in OSEP’s letter, and resources of more

information.

Christmas Sneaux for Local Non-Profits

http://www.parentcenterhub.org/repository/brief-school-resource-officers/http://www.parentcenterhub.org/repository/brief-school-resource-officers/

18 Quarterly Informer

Affordable Care Act (ACA):

How The ACA is Helping Children with Special Needs and Their Families

The Affordable Care Act (ACA) has helped both children with disabilities and their parents. Two reports from the Urban Institute (see Resources) highlight how two generations are benefiting from healthcare coverage under the ACA.

How Health Care Coverage is Maximized

Research shows that when parents have coverage, their children will too.i One of the Urban Institute reports stated that “… just 1.7 percent of insured parents reported that their child is uninsured… In contrast, 25.2 percent of uninsured parents reported that their child is uninsured.” Medicaid expansion data showed that uninsured parents were three times as likely as insured parents to have children who were eligible for Medicaid yet were uninsured. Making sure parents have health insurance also helps retention for children’s coverage, resulting in continuity of care.

Data presented at the NJ Hospital Association showed that uninsured children and adults were diagnosed on average two to four years after their peers who had insurance coverage. This results in increased morbidity and mortality, since conditions are more severe and costly when there is a delay in diagnosis. Uninsured children and adults are less likely to access preventive services as well, which are now provided at no cost for families under the ACA. These services include but are not limited to:

developmental screening depression screening newborn hearing screening vision screening immunizations lead screening for at risk children obesity screening special services for women regarding pregnancy, mammograms,

cancer screenings, etc.

What Gains Have Been Made under The ACA for Families? The Urban Institute reports indicate that there has been a decrease of 36% in uninsured parents since enactment of the ACA, and not-ed that “the share of parents with health insurance increased 6.4 per-centage points and the share of children with coverage increased 1.7 percentage points – a historic high for families.” Notably there were “large declines [in uninsurance rates] among low-income and Hispanic parents and a narrowing of the difference in uninsurance rates between parents and children through early 2015.”

Resources: Urban Institute: “Time for a Checkup: Changes in

Health Insurance Coverage, Health Care Access and Afforda-bility, and Plan Satisfaction among Parents and Children between 2013 and 2015” http://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.html

“QuickTake: Further Reducing Uninsurance among Parents Will Require Tackling Affordability Concerns” http://hrms.urban.org/quicktakes/Further-Reducing-Uninsurance-among-Parents-Will-Require-Tackling-Affordability-Concerns.html

Georgetown University Health Policy Institute “Awakening the Force of Two-

Generations’ (Children and their Parents) Coverage, Access and Affordability: Historic Gains Worth Celebrating in 2016” http://ccf.georgetown.edu/all/health-coverage-access-affordability-historic-gains-celebrating-2016/

HealthCare.gov Preventive Health Services –

Healthcare.gov: https://www.healthcare.gov/coverage/preventive-care-benefits/

mailto:mylindaelliott@yahoo.comhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/briefs/Changes-in-Health-Insurance-Coverage-Health-Care-Access-and-Affordability-and-Plan-Satisfaction-among-Parents-and-Children-between-2013-and-2015.htmlhttp://hrms.urban.org/quicktakes/Further-Reducing-Uninsurance-among-Parents-Will-Require-Tackling-Affordability-Concerns.htmlhttp://hrms.urban.org/quicktakes/Further-Reducing-Uninsurance-among-Parents-Will-Require-Tackling-Affordability-Concerns.htmlhttp://hrms.urban.org/quicktakes/Further-Reducing-Uninsurance-among-Parents-Will-Require-Tackling-Affordability-Concerns.htmlhttp://hrms.urban.org/quicktakes/Further-Reducing-Uninsurance-among-Parents-Will-Require-Tackling-Affordability-Concerns.htmlhttp://hrms.urban.org/quicktakes/Further-Reducing-Uninsurance-among-Parents-Will-Require-Tackling-Affordability-Concerns.htmlhttp://ccf.georgetown.edu/all/health-coverage-access-affordability-historic-gains-celebrating-2016/http://ccf.georgetown.edu/all/health-coverage-access-affordability-historic-gains-celebrating-2016/http://ccf.georgetown.edu/all/health-coverage-access-affordability-historic-gains-celebrating-2016/https://www.healthcare.gov/coverage/preventive-care-benefits/https://www.healthcare.gov/coverage/preventive-care-benefits/

19 Quarterly Informer

Families with insurance reported better access to care than those without insurance, which means families didn’t go without care or struggle as much with medical expenses. Parents were more satisfied with the newer health plans and thought they could get care when their child needed it, which is especially important for children with special health care needs. One of the Urban Institute reports noted that these gains have been made even though “Children were not the primary target of the ACA’s coverage provisions given that they have had substantially lower uninsurance rates than parents and other adults.”

Remaining Barriers

Although there have been improvements in coverage for both children and their parents -- 96.4% of children and 89.6% of parents have health insurance – there are still many children and families who are eligible for health care coverage but remain uninsured. The Urban Institute found that most common reason for this is concern about affordability. Some families may not be aware of the subsidies available to help pay premiums. Others have incomes too high for Medicaid but not high enough (100 percent of the federal poverty level) to get those subsidies (known as the “assistance gap”). Other individuals are ineligible for premium subsidies or Medicaid due to immigration status. And parents who are ineligible due to immigration status may not realize that their children may be eligible for Medicaid or premium subsidies. Lastly, one third of uninsured families are in states that chose not to expand Medicaid. Affordability could be addressed either by Medicaid expansion and/or increased financial assistance in the Marketplace.

In sum, there have been improvements in coverage for both children with special needs and their parents. However, there are still obstacles to coverage for some families, such as affordability, ineligibility due to immigration status, and failure of states to expand Medicaid. Additionally, there are some children and families that may not be aware that they are eligible so remain unenrolled. Overall however, the latest data indicates that there has been increased enrollment and access to care including preventive care, which will most importantly result in better health outcomes for children with disabilities and their families.

This tip sheet is based on an ACA blog authored by Lauren Agoratus, M.A. Lauren is the parent of a

child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the

southern coordinator in her the New Jersey Family-to-Family Health Information Center, both

housed at the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org. More of

Lauren’s tips about the ACA can be found on the website of the Family Voices National Center for

Family/Professional Partnerships: http://www.fv-ncfpp.org/.

i http://www.cbpp.org/sites/default/files/atoms/files/expanding-coverage-for-parents-

helps-children7-13.pdf

The Urban Institute report cited a number of problems faced by families without insurance. “For

Instance, in September 2015 nearly 6 in 10 uninsured parents …reported that their family often or

sometimes ran out of food in the previous 12 months… In addition, 45.0 percent of uninsured parents

reported that they often or sometimes were unable to pay the rent, mortgage, or other housing costs;

69.3 percent had problems with unexpected bills, such as car repairs or home repairs; and 44.7

percent were unable to make the minimum payment on a credit card bill or loan.”

http://www.spanadvocacy.org/http://www.fv-ncfpp.org/

20 Quarterly Informer

Mark your calendar and plan to attend.

Disability Rights Day “We’re going to the State Capitol in

Baton Rouge!”

Wednesday, April 26, 2017

Please contact Mylinda Elliot for

more information at 337-436-2570

or info@fhfswla.org

Our very own Mrs. Cynthia and her

husband, in New York and on the

Today Show!

21 Quarterly Informer

The following article was written by a friend and fellow director of an FHF Center. I wanted to share her thoughts

with you because I believe it’s important! I remember being a new parent feeling lost and isolated and the joy that I

felt when I found other parents like me and found my voice as an advocate. That journey took many years and

continues today. We desperately need NEW parents to step up and continue to advocate for individuals with

disabilities and their families!! If you don’t know what to do...call or email me...I will help you get started!! Susan

Stop Riding on Coat Tails! By: Mary Jacob

Looking for the perfect New Year's Resolution? How about we all stop riding on the coat tails of advocates of

generations past? There is no doubt we are all very busy with families, work and the day to day things we must do in

order to survive. However, when you have a family member with a disability - unfortunately, it does require you to get

educated and actively advocate. You can't depend on others to do it for you. Nobody knows your story better than

you. I can't imagine how services would be significantly different for all of our children with disabilities if people like

Kay Marcel, Mike Vasko, Frances Hilburn, Drew Fluke, Doris Machinski, Tara Messenger, Mary Pirosko, Pat Cranford,

Gary McKee and Ida and Jerry Mialaret and others didn't blaze the trail for us. These folks worked nonstop to get Act

378 passed in 1989. Less than thirty short years ago some parents had no choice but to put their child in an institu-

tion. So the time has come for you to step up and carry this torch.

Below is a recent Facebook post from my friend and colleague Bambi Polotzola, Executive Director of Louisiana

Governor's Office of Disability Affairs and mom of a young man with autism. With her permission I'm reprinting it

because her message is spot on and what I believe is a huge problem today. Here is Bambi's very bold statement:

This post is addressed to my disability advocate friends. Actually, they are my family and just as I'm very vocal with

my biological family, I must be vocal with my disability family.

Some of us probably all of us at some point, follow along and even repeat what our friends, families, and coworkers

say. The fact is most of those people, as much as they may love us and our children, have no clue as to the complexi-

ty of policies that affect our children and the services they need. It is NOT ok for us as parents and self-advocates to

just "go along to get along." We have to be involved and understand the issues so that we can advocate and im-

prove the lives of people with disabilities.

When was the last time you attended a school board meeting or called your school board member? When was the

last time you went to the Capitol when disability advocates attended on an issue? When was the last time you visit-

ed, called, or talked to your legislators? When was the last time you attended a social event with a disability group?

When was the last time you attended a training in person or online about anything that will give you more

knowledge as to better help yourself and/or your child?

Perhaps we've been riding on the coat tails of advocates of past generations for too long. We MUST take responsi-

bility and quit with the excuses.

I usually try to be very supportive and understanding. Today I'm not understanding! Each and every one of us has an

obligation to our children and to others with disabilities to make this world better for them. If anyone of us is not,

we are failing our children and each other. My child is depending on you and your child is depending on me. We

can't throw our children under the bus due to cowardliness to stand up and speak out even when the majority takes

the opposing stance.

Do what's right ... and be bold about it.

Act 378 is the legislation that created Home and Community Based Services (waivers) and the Families Helping

Families Centers. Thanks to advocates like Donna Yancey, Debbie Braud, Diane Hazelwood, Sharon Hager, Alicia

Banks, Susan Benoit Riehn, Lydia Thibodaux, Sharyn Scheyd and others for working endless hours starting the

statewide family resource network to support parents of children with disabilities. These parents raised the bar for all

of us. They inspired us to want more for your children and taught us anything was possible if you believed in your own

power to make change.

22 Quarterly Informer

Stop Riding on Coat Tails! By: Mary Jacob (continued)

Start your New Year’s Resolution by registering for some trainings offered by Families Helping Families and other

disability organizations (See below under upcoming trainings). Start your New Year’s Resolution by registering and

attending the legislative roundtable in your region (See below under Lagniappe/LaCAN. Start your New Year’s

Resolution by calling your legislators and letting them know about your family and how disability services need

continued funding.

I'm going to start my New Year's Resolution by thanking the three mothers who impacted me the most in my early

years of advocacy. These three women I looked up to and still admire to this day. These moms were my first

mentors and demonstrated daily the difference between a job and passion. Thank you, Rose Gilbert for teaching me

how to allow my children to grow into independent adults. I watched and listened to you tell me how important it

was for Nick to have a meaningful life which would never happen if he wasn't given the opportunity to explore his

neighborhood, work, vacation and live his life as independently as possible knowing that he could have been hurt

mentally or physically. You knew it was the right thing to do. Thank you, Carol Calix for teaching me the true mean-

ing of "presuming competence". Your stories about Alicia often amazed me. When some would doubt her ability to

understand you never doubted this ability and clearly knew she didn't need a voice to have a voice. Last but not

least, thank you Brenda Singelmann for teaching me how we should never take anything for granted. I quote you

often when I tell people, "Everyone is only one accident away from being disabled". People that don't think disability

topics are important to them rethink it when I tell them about Roberta and just how quickly a family can be thrust

into the disability arena. Thanks for everything you three did to assist in that trail blazing and a very special thanks to

Nicholas Gilbert, Alicia Calix and Roberta Singelmann for being the true warriors behind all that passion.

To quote Bambi, "Do what's right....and be bold about it."

Take that torch and run. Now.

Be the CHAMPION your child and others with disabilities need!

Happy 2017 to you and your family!

Mary Jacob, Rose Gilbert, Carol Calix and

Brenda Singlemann

Need a speaker for your civic group or organization meeting???

FHF would love to share who we are and what we do with you, give us a

call to set up a time!!

Families Helping Families mission is to enable and empower individuals

with disabilities and their families by providing information, referral,

education, training, peer support and advocacy skills.

Families Helping Families vision is that all individuals with disabilities

have the opportunity to attend school, live, work and play in their

own community.

Susan & Wallace spoke to

the Kiwanis Club of South

Lake Charles in December.

23 Quarterly Informer

Families Helping Families of SWLA

2927 Hodges Street

Lake Charles, LA 70601

Phone: 337.436.2570

Fax: 337.436.2578

Toll Free: 1.800.894.6558

Email: info@fhfswla.org

Website: www.fhfswla.org

Families

Helping

Families

It’s Who W

e Are…

It’s What

We do..

.

Non-Profit

Organization

U.S. Postage

PAID

Lake Charles, LA

Permit No. 423

Opinions contained herein do not necessarily represent those of the funding source, and no endorsement should be inferred.

Important Dates…

January 16 Martin Luther King Day-

Office Closed

February 27 and 28 Mardi Gras Holiday-

Office Closed

March 12 Day Light Savings Time- Spring your clocks forward one hour!

Important Dates…

mailto:info@fhfswla.orghttp://www.fhfswla.org