1 Quarterly Informer

Quarterly Inf rmer

Spr ing Summer 2016 Edi t ion

Who we Are …What we Do!

Susan Benoit

Director

Cynthia Brown

Bookkeeper

Wallace Johnson Transition Facilitator

Mylinda Elliott

Program Manager, LaCAN

LaTEACH Team 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

FHF SWLA held it’s Annual Board Meeting on February 2, 2016. At the annual meeting we elected officers for 2016-2018. Returning to serve for the next two years

are:

Bernadette Courville—Chair

Leslie Q. Knox—Vice Chair

Secretary—Cynthia Tomlinson

Treasurer—Leah Fuselier

Two new Board members were elected and they are:

Kimberlee Gazzolo

Khaja Moinuddin

Welcome to our Officers and new Board Members!!

FHF SWLA is proud to have a very active working Board of Directors. We meet on the 1st Tuesday of the month in alternating months. Currently we are seeking board

members who are self-advocates (individuals with developmental disabilities), parents of younger children with disabilities and community members with

financial or investment expertise. If you are interested please call or email for more information about the board membership process.

2 Quarterly Informer

The City of Lake Charles fully complies with Title VI of the Civil Rights Act of 1964 and related statutes, executive orders, and regulations in all

programs and activities. The City operates without regard to race, color, national origin, income, gender, age, and disability. Any person who believes

him/herself or any specific class of persons, to be subjected to discrimination prohibited by Title VI may by him/herself or by representative file a

written complaint with the City of Lake Charles. The City's Title VI Coordinator may be reached by phone at (337) 491-1440, the Mayor's Action Line at

(337) 491-1346, or contact the appropriate Department Head.

To Register Contact Wallace Johnson at Families

Helping Families of SWLA

3 Quarterly Informer

Thank you to all of the sponsors and volunteers that made

the Second Annual Pull for FHF Clay Shoot such huge

success!

Title Sponsor

Hankins Development

Cheniere Energy

Airworks

Capitol One

Leslie Q. Knox

Leah Fuselier CPA

Lisa’s Accounting

David Olney

Open Air MRI

Louisiana Mortgage Associates

PAR Group

McElveen Group

Brandt Pederson

Business First Bank

First Federal Bank

Stulb & Associates

Don’s Car Wash

Prime Cutlery

Paisley Peach

Bernadette Courville

Mona Timpa

Golf Carts Unlimited

Ken Conner Tires

Susan Salvo

Sara & Seth Washington

Christus St. Patricks

Ship to Shore

Leah Fuselier

Lake Arthur Butane

Walk Ons

Lake Charles Gun Club

Door Prize Donors

4 Quarterly Informer

A publication from the Louisiana Department of Education Website:

“Louisiana Special Education Guidance for High School Students”

The Louisiana Special Education Guidance for High School Students serves as a reference tool for local education agency (LEA) administrators and high school staff who work with students with disabilities. This document has been updated to reflect the policy changes that provide students assessed on the LAA 1 an opportunity to pursue a high school diploma.

http://www.louisianabelieves.com/docs/default-source/academics/special-education-guidance-for-high-school-students.pdf?sfvrsn=2

This is information that you need to know if you have a student with disabilities in high school or

will be entering high school soon.

New to our library...

“The Out-of-Sync Child

Has Fun”-The first

accessible guide to

examine Sensory

Processing Disorder,

The Out-of-Sync Child

touched the hearts and

lives of thousands of families. Carol

Stock Kranowitz continues her

significant work with this companion

volume, which presents more than one

hundred playful activities specially

designed for kids with SPD.

“Helping Your Teenager

Beat Depression“ -

Offers parents a strategy

that enables them to

become active partners

in the treatment of their

child's depression. The

approach used can help

parents address minor mood problems

and reduce the risk of relapse and with

professional help, stop more serious

depressive disorders.

5 Quarterly Informer

Save the Date Friday, June 17, 2016

For a Community Building Workshop with Al Condeluci at the Springhill

Suites

1551 West Prien Lake Road, Lake Charles, Louisiana 70605

Contact Our Office to Register

Al is CEO of CLASS, a community based support system for folks with all types of

disabilities in Pittsburgh, Pennsylvania. He holds an MSW and PhD from the

University of Pittsburgh, where he is on faculty in the School of Health and

Rehabilitation Sciences and the School of Social Work. He has authored 7 books, including the acclaimed, Interdependence: The Route to Community (1991) and the

newly released, The Macro Change Handbook (2015).

Al lives in McKees Rocks, Pennsylvania, just outside Pittsburgh, on the family hill with his wife, children and some 30 other

members of the extended Condeluci family. For more information check out

www.alcondeluci.com.

Lunch and Learn with Families Helping Families of SWLA

and McNeese Autism Program to learn about

Supportive Counseling Services for Families

Join us Tuesday, May 3, 2016 from 11:30 AM - 1 PM

at Families Helping Families of Southwest Louisiana

2927 Hodges St

Lake Charles, LA 70601

337-436-2570

800-894-6558 (toll free)

info@fhfswla.org (Email)

Registration will be limited. Please Register early to secure

your seat and reserve your lunch.

6 Quarterly Informer

The Governor’s Office of Disability Affairs Presents:

2016 Inclusive Schools Art Contest

Contest Theme: “Inclusion Matters: A Better World For All” To bring greater awareness of the

importance of inclusion in today’s society, the Governor’s Office of Disability Affairs (GODA)

encourages you to participate in the 2016 Inclusive Art Show Contest. GODA will be accepting

entries that illustrate or describe ideas related to this year’s theme and accompanying

definitions of inclusion of persons with disabilities. Medals and special recognition from

Governor John Bel Edwards will be presented to the winners. Contestants are encouraged to

use art as a means to share their vision, experiences, and talents to demonstrate this year’s

theme. Winning entries will be publicly displayed.

All entries must be received by May 17, 2016

For more information please visit…

http://gov.louisiana.gov/assets/docs/Programs/2016-Inclusive-Art-Show-

Contest.pdf

Congratulations to long time Disability Rights Advocate

Ms. Bambi Polotzola for her appointment as the Executive

Director of the Louisiana Governor’s Office of Disability

Affairs

The mission statement of the Louisiana Governor's Office of

Disability Affairs is: "To promote the rights and opportunities for persons

with disabilities in the State of Louisiana."

Coming in June…

Autism Myths Friday, June 24, 2016

This workshop will be presented by

Families Helping Families of SWLA

and the McNeese Autism Program.

The workshop will be held during the

day at the Beauregard Parish Library

in DeRidder Louisiana. Residents in

Allen and Beauregard parishes are

encouraged to attend. Sign up and a

flyer will be available soon.

7 Quarterly Informer

Disaster Assistance

For Victims of the

Recent Flooding

If anyone needs assistance applying for FEMA they can go by the Goodwill WorkPlace

Training & Assistance Center.

Goodwill WorkPlace Training & Assistance Center

1202 Kirkman Street Suite C Lake Charles, LA 70601

(337) 310-1882

If anyone has lost medical

equipment/assistive technology due to the flooding in our area

the Southwest Louisiana Independence Center (SLIC) has a federal contact for this.

Contact Southwest Louisiana

Independence Center (SLIC) at 4320 Lake Street

Lake Charles, LA 70605 (337) 477-7194

JOIN LaDisABILITYtalk Group at

https://www.facebook.com/groups/1128575273840846/

and then click “join”.

La Disability Talk is a statewide, on-line group where we can Talk Everyday All Day about disability issues! Ask questions, share and

make comments to Families Helping Families of Jefferson and Louisiana Parent Training

and Information Center staff and your peers about anything disability related.

8 Quarterly Informer

Do you know who is your State Representative and

State Senator ? You can find out that information by

calling our office, by entering your address at the link

below, or by clicking on the picture to the right. They

want to hear from their constituents. If you need tips

on how to develop these relationships, or your

“elevator speech” please let us know.

https://www.legis.la.gov/legis

/FindMyLegislators.aspx

News from LaTEACH

Mylinda Elliott

Things have been very interesting around

Louisiana concerning the Department of

Education. As you know we have new appointed

BESE members with a new Governor and newly

elected BESE members.

I am currently looking for parents of children

with disabilities who have a child experiencing

restraints or seclusion in the school setting. I am

also looking for people concerned about the

disparities in funding for students with disabilities.

Ideally funding should be sent to at least the

school system where the child is located. I have

lots of information to share and discuss around

this issue.

Please call me and join LaTEACH to receive our

free emails on policies affecting children with

disabilities access to an appropriate education

and support from me on using your advocacy

skills and strategies to impact education policies.

My number is 337-436-2570.

9 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 6, 2006

Supports Waiver

December 31, 2014

Not sure where you are on the registry?

Call 1-800-364-7828

Verified with Statistical Resources 03/18/2016

By Mylinda Elliott

The Every Student Succeeds Act (ESSA) replaces

No Child Left Behind of 2001. Though ESSA is

about all students, I will look at a couple of pieces

of it that affects students with disabilities in

particular.

One of the pieces is about a limit on the number of

students in each grade that can take the LAA1

test. IDEA gives the IEP team the responsibility

of deciding which test the student will take

according to the student’s needs. This may result

in conflict in the next few years. Particularly since

Louisiana recently expanded the number of

students allowed to take LAA1.

ESSA supports Louisiana’s recent efforts to

include diplomas for students with significant

disabilities in the accountability system. This is

good for students with disabilities. It makes

students with disabilities an asset to the school

when they get diplomas. There is much discussion

about the wording around that diploma though.

This will need to be watched.

ESSA requires the state to support the school

system around the issues of Bullying and

Restraints and Seclusion. Although our state has

had Act 328 of 2011 to give the school system

guidance around restraints and seclusion,

Louisiana has not had much support since then.

Again this will need to be watched.

Every Student Succeeds Act

and Students with

Disabilities (ESSA)

10 Quarterly Informer

News from LaCAN

Mylinda Elliott

This is a difficult article to write because things are changing in the state so fast. By the time

you read this we will be finished with the special session and into the regular session. At the

beginning of the special session we were expecting MASSIVE cuts to the developmental

disability services including but not limited to ending ALL of the waivers and Long Term

Supports and Services (LTSS).

The legislators have been working on finding revenue to fill a huge budget gap between now

and the end of June 2016. They are also working on an even bigger hole in next year’s budget.

I can only hope they have found solutions by the time you read this.

At this time I am looking for parents who are worried about losing their Children’s Choice

waiver, ROW waiver, Supports waiver, or LTSS. I hope and pray this has changed but call me to

make sure.

If you would like information and support on the expansion and improvement of the

community and family support system for people with disabilities please call me to join

LaCAN. We have frequent email updates, regional workshops, a Disability Rights Day trip to

Baton Rouge, and information support from me.

If you would like to join LaCAN call me at 337-436-2570 or 1-800-894-6558.

11 Quarterly Informer

2016 The Red Book - A Guide to Work Incentives

Resources for you on

SSA Publication No. 64-030, (2016 Red Book), January 2016, ICN

436900 (Español).

The Red Book serves as a general reference source about the

employment-related provisions of Social Security Disability Insurance

and the Supplemental Security Income Programs for educators,

advocates, rehabilitation professionals, and counselors who

serve people with disabilities.

https://ssa.gov/redbook/

(Español)

2016 English PDF Version

2016 English HTML Version

To Order the Red Book in Alternative Format

FHF on Road

to Beauregard Parish

Families Helping Families of SWLA is heading out on the road to the Beauregard Parish Library in DeRidder on Tuesday, April 19, from 10 A.M.-2 P.M. This

will be an opportunity for you to meet our staff and learn a little

bit about Who We Are and What We Do! We look forward to

meeting you!

Thursday

May 5, 2016

5:30 PM - 8:00 PM

Families Helping

Families of SWLA

2927 Hodges Street

Lake Charles, LA 70601

You Must Register

Limited Seating!

Call (337) 436-2570 or 1-800-894-6558

12 Quarterly Informer

We want to hear

from you!

Have you been helped by Families Helping Families of SWLA? If you answered yes, please call our office,

or send us a message, answering these questions… With the possibility of more substantial

cuts to Families Helping Families centers, your testimony is always helpful in illustrating to

policymakers that what we do makes a difference! There are also occasions where families are needed to testify at the state capitol in an effort to preserve

these valuable services.

Where do you live (name of town/city)? - What is your or your family member’s disability? -

What was your situation before connecting with FHF? - What types of services/supports have you received from FHF? - How have these services/supports benefitted you/your family? -

How would your family be affected if FHF had to close its doors or limit services?

13 Quarterly Informer

A Family Orientation Workshop

Date: April 27, 2016

Time: 10:00 am - 12:00 pm

As a parent/caregiver of a child

currently receiving services from

EarlySteps, I would like to invite you

to a parent orientation workshop to

help you and your child get the most

out of your experience from the

services provided.

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?

Early Steps Transition

Workshop

Date: April 27, 2016

Time: 12:30 pm - 2:30 pm

Join us to get more

Information about

Early Steps Transition.

Guest Speaker Mylinda Elliott will

discuss what IDEA says about

Transition at age 3.

China Guillory–

Community Outreach Specialist will

walk you through the process of

Transition from Early Steps into the

school system.

For more information about any of

our workshops, or to register,

please contact our office at

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

Autism Therapy To Become Mandatory Benefit For Federal Workers By Michelle Diament

In what advocates are hailing as a major step forward, the nation’s largest employer will require

that all of its health insurance plans cover applied behavior analysis for kids with autism

beginning next year.

The U.S. Office of Personnel Management said all health plans within the Federal Employees

Health Benefits Program – which covers federal employees, retirees and their dependents – must

include the behavior therapy starting in 2017.

This article was published by Disability Scoop. To read the complete article go to

https://www.disabilityscoop.com/2016/03/01/autism-mandatory-federal/21985/

14 Quarterly Informer

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government. —————————— *Child and Adolescent Health Measurement Initiative (2013). “Who Are Children with Special Health Care Needs (CSHCN).” Data Resource Center, supported by Cooperative Agreement 1-U59-MC06980-01 from the U.S. Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB). Available at www.childhealthdata.org. Revised 4/15/13.

Did You Know?

More than one in five families has at least one child with special health care needs – 23% of families.

Approximately 14.6 million children ages 0 to 17 in the US have special health care needs (SHCN). That’s nearly 20% (19.8%).

The health care needs of these children may be physical, developmental, behavioral or emotional and represent a wide range of conditions including autism, cerebral palsy, developmental delay, intellectual disabili-ties, depression, learning disabilities, and epilepsy.

Children with SHCN often have more than one condition and functional difficulties in more than one area that impacts their daily lives, such as breathing, communicating, chronic pain, learning, moving around, behavior, or challenges in making and keeping friends.

Their families typically experience greater stress, struggling to meet the needs of their child in a maze of multiple and complex systems of care. Many families find that insurance is not adequate, care coordination is ineffective, and referrals are difficult. Families of children with SHCN are less likely to have family-centered health care.

Louisiana Family to Family Health Information Center

Makes a Difference:

Through LaF2FHIC we have a direct impact on the lives of children and youth with special health care needs and their families in Louisiana.

We provide information, training, and sup-port to thousands of families and profes-sionals about current issues in health care—the Affordable Care Act, Medicaid, Family-Centered Care, Healthy Lifestyles for Children & Youth to Combat Obesity, Transition from Pediatric Care, Genetics, and more.

We give families tools and information to make informed decisions about their children’s health care.

We provide one-to-one family support, peer mentoring, and leadership development.

We work with Family Voices at the national level to ensure important programs are funded and that health policy is family-centered; we work with partners at the state and local level to ensure that the voices of families are heard.

March 2016

15 Quarterly Informer

Affordable Care Act (ACA): How Can Families and Professionals Help Children with Special

Needs Keep Insurance Coverage as they Age Out? Families and professionals working with children with disabilities need to

know about various insurance coverage options as children age out of

programs. Choices may be different depending upon whether the insurance is employer-

based, obtained through the Marketplace, or public insurance. NOTE: Children with special

health care needs may be eligible for more than one type of plan. What is Dependent Coverage?

There are several ways families can keep their child under their plan. These are:

• Under the ACA (Affordable Care Act), families can continue health insurance coverage for

their children until age 26, even if their children are living on their own. (See also Marketplace

plans, below.)

• Some states have their own laws, which if more generous, would override federal

requirements. For example, dependent coverage is available until age 31 in New Jersey if the

dependent young adult is living at home, unmarried, etc.

• Using the “disabled dependent provision”, sometimes still called the “certification of the

handicapped provision”, a child could be covered regardless of age as long as the parent is

employed. Parents can ask their employer’s human resources department for the form, which

is important to complete prior to age 18, since coverage, once suspended, cannot be restored. Marketplace Plans

As mentioned previously, families can continue dependent coverage until age 26 under the

ACA. The Marketplace will only pick one type of plan (Qualified Health Plan {QHP} or

Medicaid.) Families can apply for coverage during open enrollment periods, special

enrollment situations (e.g. losing a job), or Medicaid anytime.

Adult children up to age 26 can stay on a parent’s plan even if they are:

• married

• not living with their parents

• attending school

• not financially dependent on their parents

• eligible to enroll in their employer’s plan Public Insurance

Medicaid provides coverage for individuals who have disabilities or low income. After age 18,

the individual is seen as a “family of one” and parental income is no longer “deemed” as part

of their income. States that expanded Medicaid under ACA have coverage starting at age 19.

This may make it possible to transition from Medicaid for children or the Children’s Health

Insurance Program (CHIP) to adult Medicaid, although this is not automatic, so it is necessary

to apply. Some children may be eligible for a Medicaid waiver due to their medical status,

regardless of family income.

16 Quarterly Informer

Parents can contact their Maternal and Child Health Title V agency or their Family Voices/Family

-to-Family Health Information Center (see Resources.) In most states, if a child is eligible

Supplemental Security Income (SSI), which provides financial aid, they are also eligible for

Medicaid.

Medicare offers coverage for individuals over age 65 or with certain disabilities. Medicare will

cover children who have kidney disease and need dialysis or transplant. Disabled Adult Child

(DAC) provisions allow eligibility for Medicare if the child was disabled before age 22 and a

parent is disabled, retired, or deceased. Other Options for Health Coverage

Catastrophic Plans: People under age 30 are eligible for catastrophic health plans. The plans are

called “catastrophic” as they protect against high costs of care for a major illness. The benefits

are limited for both primary and preventive care. Catastrophic plans have fewer benefits than

QHPs so may not be the best choice for people with disabilities. College Plans: Students are not exempt from the requirement to have insurance that meets certain

standards or else pay a penalty, but many college health plans qualify as coverage for this

purchase. However, some of these plans many not have as many benefits as QHPs or may not

qualify as creditable coverage under the health law. Students should check to see if they are

eligible for tax credits to purchase a Marketplace plan. Note that, in states that have expanded

their Medicaid program, students age 19 and older may qualify for Medicaid. Having More than One Plan: A child may be eligible for a private employer plan as well as

Medicaid and/or Medicare as mentioned previously. It is important that there is “coordination of

benefits” for all plans to reduce costs for families. If a provider doesn’t participate in Medicare,

the doctor can send their “opt-out” Medicare letter to the private insurance company with the

bill. Families can even file claims this way (see Resources). Also, if a provider doesn’t

participate in Medicaid but the child also has private coverage, the doctor can contact the

insurance plan to find out how to bill “out of network” as secondary. Families have options available to them as their children “age out.” By checking resources (see

below) and contacting the organizations listed there, they can determine the best option for their

child with disabilities. 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/.

17 Quarterly Informer

State Interagency Coordinating Council (SICC)

Parent invitation

What is the SICC? The State Interagency Coordinating Council is a federally and state mandated

independent board that functions under the Governor’s Office of Community Programs in an advisory

capacity to EarlySteps: Louisiana’s Early Intervention System.

Federal legislation for infants and toddlers with special needs and their families, Part C of the Individuals with

Disabilities Education Improvement Act of 2004 (IDEA), calls for a comprehensive system of coordinated

early intervention services. In Louisiana, this system is called EarlySteps: Louisiana’s Early Intervention

System. EarlySteps is an interagency system administered through the Department of Health and Hospitals

(DHH), Office for Citizens with Developmental Disabilities. The Governor designated DHH as the Lead

Agency in 2004.

Membership: The Governor appoints members of the State Interagency Coordinating Council (SICC) to

represent designated agencies and stakeholders. Our membership is as follows:

All council members are appointed by the governor and represent the population of Louisiana. The SICC

membership is composed of : (1) at least 20% parents of children with disabilities; (2) at least 20% public

or private providers of early intervention services; (3) at least one member from the state legislature; (4) at

least one member representing personnel preparation; (5) at least one representative from each of the state

agencies involved in the provision of, or payment for, early intervention services; (6) at least one member

from the state education agency responsible for preschool services; (7) at least one member from the agency

responsible for the state governance of health insurance; (8) at least one member representing a Head Start

agency or program in the state; (9) at least one member representing the agency responsible for child care;

(10) other members selected by the Governor.

Why Do We Need Parent Representatives? Your valuable input preserves the integrity of our Early

Intervention system. The SICC would like to invite parents across Louisiana to apply for the position of

parent representatives on the SICC. We will be accepting applications from all parents who meet the

following parent representative requirements as per our statute:

You are a parent of an infant(s) or toddler(s) with special needs or children with special needs age twelve

or younger

You are a parent with knowledge of or experience with programs for infants and toddlers with special

needs.

You parent of an infant or toddler with special needs or a child with special needs age six or younger

To learn more about the role of the ICC, please visit our website (click on the Resources tab) for

orientation materials: http://gov.state.la.us/SICC

To apply, visit the Boards and Commission website and click on State Interagency Coordinating Council. https://wwwprd.doa.louisiana.gov/boardsandcommissions/home.cfm Once you have completed both steps, contact Juanita Washington, Executive Director, at 225-219-9479 or at

Juanita.Washington@LA.GOV

18 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 We 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…

April 15 Community Dance

April 19 FHF on the Road to DeRidder/

Beauregard Parish

April 20 Driving Info Workshop in Jennings

April 27 Two EarlySteps Workshops

May 5 IEP Boot Camp Workshop

May 12 There’s an App for That Workshop

May 30 FHF Office Closed for

Memorial Day