Early Matters E-Newsletter

November 2018

This is my favorite month for so many reasons, but the main reason is because it’s Thanksgiving time! This

time of year really gets me remembering why I should be thankful and how blessed I am in many aspects of

my life. I have learned over time, that focusing on the positive helps me get through the challenging times.

Thanksgiving is a time of year that gets me prepared and set up for a successful, positive, and innovative

year ahead. My hope is that each of you can do the same. Take some well-deserved, greatly needed family

time. Family looks different to many of us, so I hope you get to spend your time with the people you love.

A couple of months ago we had an evening at the DSAGC learning more about the BCMH (or BMH)

program. The Children of Medical Handicaps Program is only for Ohio and it is funding that all of our children

born with Down syndrome automatically qualify for the Diagnostic part at birth. There are two parts to this

program…Diagnostic and Treatment. Treatment is based on income and complex medical care needs.

When we were at the meeting, many questions came up about specific diagnoses and whether they are

covered under BCMH. I compiled a list of diagnoses that occur more common in our children and asked for a

breakdown. Below you will find the list along with the code that they use and whether it is covered under the

BCMH program.

**Please note that this is only a starting list. If you have a specific diagnosis that you would like me to look

into then please email it to me. I recommend you go straight to your health department nurse that supports

you. If you have further questions about your nurse coordinator then please email that as well.

Atrial Septal Defect - Q21.1 - Atrial septal defect - Eligible

Patent Ductus Arteriosus - Q25.0 - Patent ductus arteriosus - Eligible

Trisomy 21 – Eligible for diagnostic, ineligible for treatment, Q90.9 - Down

syndrome, unspecified

Infantile Spasms - G40.82 - Epileptic spasms - Eligible

Esophageal Reflux K21.9 - Gastro-esophageal reflux disease without

esophagitis, Eligible for diagnostic, Treatment is criteria based – child must be on

a daily medication or have a g-tube.

Retinopothy of Prematurity - H35.109 - Retinopathy of prematurity, unspecified,

unspecified eye - Eligible

Congenital Hypothyroidism - E03.1 - CONGENITAL HYPOTHYROIDISM

WITHOUT GOITER or E03.9 - Hypothyroidism, unspecified - Eligible

Jena Wells

Early Matter Coordinator

JenaW@dsagc.com

513. 761. 5400 ext. 207

Hyperthyroidism - E05.90 - Thyrotoxicosis, unsp without thyrotoxic

crisis or storm - Eligible

Moya Moya - I67.5 - Moyamoya disease - Eligible

Celiac - K90.0 - Celiac disease – Eligible

Nystagmus H55.0 – Nystagmus – Ineligible for diagnostic and treatment

Hirschsprung's disease - Q43.1 - Hirschsprung's disease – Eligible

Sleep Apnea (Central and Obstructive) - G47.31 - Primary central

sleep apnea and G47.33 - Obstructive sleep apnea (adult) (pediatric) –

Eligible for diagnostic services, Treatment is criteria based - ELIGIBLE IF

CHILD HAS ANOTHER DIAGNOSIS THAT CAN BE RELATED TO THE

APNEA (I.E. RESPIRATORY CONDITION, CARDIAC CONDITION,

CONGENITAL DEFORMITY WHICH IS CAUSING OBSTRUCTION,

ETC.)** NOTE: OBESITY-RELATED SLEEP APNEA CONTINUES TO

BE INELIGIBLE**

Malacia - J39.8 - Other specified diseases of upper respiratory tract – Eligible for diagnostic services,

treatment services criteria based - NOT MEDICALLY ELIGIBLE AS THE ONLY DIAGNOSIS. ELIGIBLE

ONLY WHEN CHILD HAS ANOTHER MEDICALLY ELIGIBLE CONDITION FOR WHICH THEY ARE

RECEIVING TREATMENT SERVICES.

Cranio Synostosis - Q75.0 – Craniosynostosis – eligible for diagnostic services, treatment services criteria

based - SEE ORTHODONTIA GRID - MEDICAL ELIGIBILITY FOR CERTAIN SYNDROMES MAY BE

BASED ON NEED FOR ORTHODONTIA. **** PLEASE NOTE THAT MACROCEPHALY AND

MICROCEPHALY ARE NOT ELIGIBLE FOR BCMH TREATMENT SERVICES ****

Catarac - H26.9 - Unspecified cataract - Eligible

Hip Displasia - Q65.89 - Other specified congenital deformities of hip – Eligible

Leukemia – There are multiple types of Leukemia. This has to be more specific. In general, this would be a

covered diagnosis.

Nephrology-kidney issues - This has to be more specific.

Growth Hormone – This is diagnosis dependent. However, in general, if the child is on growth hormone, the

diagnosis would likely be covered.

Hypothyroid - E03.9 - Hypothyroidism, unspecified - Eligible

Gastrointestinal – You need to be more specific.

Cardiology - You need to be more specific.

Constipation - K59.00 - Constipation, unspecified – Eligible for diagnostic, ineligible for treatment.

Eczema - Ineligible

Alopecia - Q84.0 - Congenital alopecia - Eligible for diagnostic, ineligible for treatment.

Psoriasis - L40.9 - Psoriasis, unspecified - Ineligible

Hearing Loss – This would be eligible with appropriate documentation

Speech - This is diagnosis dependent. If not part of the diagnosis service package, it can be

requested. However, it will be dependent on the documentation submitted. If it says anything about

developmental delay, the CMH program would not cover it.

Eosinophillic Disorders K20.0 - Eosinophilic esophagitis – Eligible

for diagnostic, treatment services are criteria based.

Dysphagia - R13.10 - Dysphagia, unspecified - eligible for diagnostic

services, treatment services criteria based - ELIGIBLE WHEN

SECONDARY TO AN UNDERLYING CONDITION THAT IS

MEDICALLY ELIGIBLE FOR TREATMENT (I.E.CLEFT LIP/PALATE;

PIERRE ROBIN SYNDROME;ESOPHAGEAL ATRESIA,ETC) IN

THESE CASES, TREATMENT FOR DYSPHAGIA IS ELIGIBLE AS A

COMPONENT OF PRIMARY CONDITION. MANAGING PHYSICIAN

IS BASED ON POLICY RELATED TO THE PRIMARY CONDITION. *

ELIGIBLE AS THE SOLE DIAGNOSIS IF SUPPORTED BY MEDICAL

DOCUMENTATION.

GERD K21.9 - Gastro-esophageal reflux disease without esophagitis,

Eligible for diagnostic, Treatment is criteria based – child must be on a

daily medication or have a g-tube.

Chronic middle ear fluid and infections – Eligible with another medically eligible condition.

Enlarged tonsils and adenoids - Eligible with another medically eligible condition.

Club foot - Q66.0 - Congenital talipes equinovarus – Eligible

Cleft lip - Eligible

Cleft palate – eligible

Micrognathia - Q87.0 - Congen malform syndromes predom affecting facial appearance – eligible for

diagnostic services, treatment services criteria based. SEE ORTHODONTIA GRID - MEDICAL ELIGIBILITY

FOR CERTAIN SYNDROMES MAY BE BASED ON NEED FOR ORTHODONTIA.**** PLEASE NOTE THAT

MACROCEPHALY AND MICROCEPHALY ARE NOT ELIGIBLE FOR CMH TREATMENT SERVICES ****

Pierre Robin Sequence - Q87.0 - Congen malform syndromes predom affecting facial appearance – eligible

for diagnostic services, treatment services criteria based. SEE ORTHODONTIA GRID - MEDICAL

ELIGIBILITY FOR CERTAIN SYNDROMES MAY BE BASED ON NEED FOR ORTHODONTIA.**** PLEASE

NOTE THAT MACROCEPHALY AND MICROCEPHALY ARE NOT ELIGIBLE FOR CMH TREATMENT

SERVICES ****

Patent Foramen Ovale - Q21.1 - Atrial septal defect – Eligible

Astigmatism - H52.2 – Astigmatism - Ineligible

Mild Sleep Apnea - G47.30 - Sleep apnea, unspecified - Eligible for diagnostic services, Treatment is criteria

based - ELIGIBLE IF CHILD HAS ANOTHER DIAGNOSIS THAT CAN BE RELATED TO THE APNEA (I.E.

RESPIRATORY CONDITION, CARDIAC CONDITION, CONGENITAL DEFORMITY WHICH IS CAUSING

OBSTRUCTION, ETC.)** NOTE: OBESITY-RELATED SLEEP APNEA CONTINUES TO BE INELIGIBLE**

Far Sightedness in babies - H52.00 - Hypermetropia, unspecified eye – Ineligible

Is PT, OT, Speech covered for certain conditions? How is it decided whether it is covered? PT, OT and

Speech are part of specific diagnoses service package. If not part of the diagnosis service package, it can be

requested. However, it will be dependent on the documentation submitted. If it says anything about

developmental delay, the CMH program would not cover it.

DSAGC Giving Tree

Families that would like to sponsor the Giving Tree program.

Thank you for your interest in being a Giving Tree sponsor. There are two ways that you can

help: sponsoring a family by shopping for gifts or giving a monetary donation for someone else to shop for

gifts. If you choose to do the shopping, you are able to select how many children/adults with Down syndrome

that you would like to sponsor. The suggested gift range is $50-$60 per person (no electronics, please). You

can drop off your gifts at the DSAGC Office on Dec 6, Dec 7 or Dec 8. Please note, after you sign-up, you

will receive a confirmation along with more information and wish-lists.

If you have any questions, please contact Jena Wells at 513.761.5400 or jenaw@dsagc.com.

Sign-Up to be a Sponsor

Make a monetary donation to the Giving Tree.

Families that would like to receive a helping hand.

We are happy to support you and your family this holiday season. All children in a family unit (18 years old

and younger) and adults with Down syndrome are eligible to receive gifts from sponsors valued at $50 - $60

per child. You will have the opportunity to share gift suggestions and clothing sizes for your child(ren).

If you have any questions, please contact Jena Wells at 513.761.5400 or jenaw@dsagc.com.

Registration deadline - November 25.

Register

Forgetting Milestones and

Learning to Measure Progress

By Mary Ellen Bogucki

I have found that the most important thing I could ever do for my daughter, Bree, was find her the right therapy. Before Bree was born I had never heard of sensory processing disorder. I knew of Autism, but my knowledge was very limited and sadly most of it came from what I saw in the movie “Rainman”. For the first five years of Bree’s life we were repeatedly told “She can’t have Autism, she is too social and at times she has eye contact.” Most of the doctors during that time period, including our first pediatrician, were only familiar with classic Autism. It wasn’t until she stimmed in front of him, twirling her fingers in front of her eyes, did he finally agree we needed an Autism evaluation, by then she was 5 years old.

Before we were recommended for an Autism evaluation, we

searched for answers. Bree’s milestones and speech were

delayed, plus she would have horrible meltdowns and we had no

idea the cause of them. When she was 3 we brought her to our

school district for a speech evaluation. Unfortunately, Bree would

not separate from me or participate. It was suggested we have a

play based evaluation. Unfortunately, that didn’t go very well

either, but the occupational and speech therapists were able to witness enough to make some

recommendations.

I will never forget that first meeting we had with the school team to discuss their findings and go over

suggestions. Having a room full of strangers telling you all the areas that your child is not performing like their

peers, is very overwhelming. I remember even telling the occupational therapist I didn’t agree with her

findings. I had never heard of sensory processing disorder and when she told me my daughter was sensitive

to touch, I was confused since most days Bree preferred being held more than anything else. She loved hugs

and I couldn’t understand the difference between deep pressure and touch. My husband told me he never

saw a room empty so fast, as when they told us she needed to start in their early childhood special education

program immediately, and I began to sob. I couldn’t imagine this child who was scared of everything, going to

school by herself.

Quickly, I accepted that this was what was best for Bree. It was what would help her to develop like the rest

of her peers. I decided I needed to learn more about these challenges my daughter had and I made an

appointment with the school occupational therapist. Once she saw that I was open to learning how to help

Bree, she handed me a book called “The Out of Sync Child” by Carol Kranowitz. I read a few pages and

immediately went out and bought my own copy of the book, so I could beginning highlighting all the pages

that pertained to Bree. It was like the book was written about Bree. I went back and returned the therapist’s

copy of the book and told her how sorry I was for not agreeing with her from the beginning.

This is from EParent.com | Click here to read the full article

Sunday, December 2 | 1-4pm Oasis Conference Center, 902 Loveland-

Miamiville Rd, Loveland, OH

The Down Syndrome Association of Greater Cincinnati

celebrates the holiday season every December by bringing

together our families for a visit with Santa and Mrs. Claus,

arts and crafts, holiday decorating, gifts and more.

It’s also a time to honor individuals who have championed our

mission and who have served as a constant source of

celebration of individuals with Down syndrome. This is a free

event, but families that wish to attend must register.

Holiday Party

Register

Hispanic Holiday Party

La Asociación de síndrome de Down de Cincinnati,

los invita a celebrar la alegría de la Navidad !

Domingo Diciembre 9, 2018 | 2 a 5 pm

ABC Pediatric Therapy

7591 Tylers Place Blvd,

West Chester, OH 45069

Por favor reserve su

asistencia antes de

Diciembre 3

Con Marina Viña (513) 490-2834

o en grupohispano@dsagc.com

http://www.dsagc.com/education

DSAGC Family Resources

Support at Every Age

Community Participation Fund

Hospital Care Packages

Community Groups

The DSAGC is here to assist you and your family members as you prepare for the birth of your new little one.

Our Early Matters Coordinator, Jena Wells, can provide guidance for you and your family, connect you with

another parent who received a diagnosis, make a personal visit and send you materials. Please know that we

care about your family and we are always here for you. Jena can be reached at JenaW@dsagc.com.

Join the DSAGC Early Matters Facebook Group. Parents with children age 0 - 5 share stories, tips,

suggestions and information. Click here to join the group.

We have a limited amount of scholarships available for individuals with Down syndrome to participate in

community activities (such as camps, soccer, swim lessons) and therapies. There is also funding available

for parents to attend educational meetings or conferences. We pay half of the request (up to $200 per

year). You must live within our 12 county area to be eligible. Please contact Lisa Steele

at lisa@dsagc.com for more information.

Is your child (18 years and younger), with Down syndrome, spending three or more days in the hospital? The

Down Syndrome Association of Greater Cincinnati would love to support you during this difficult time. Click

here to receive a Hospital Care Package.

The vision of the ‘Community Groups’ is to provide support, connections, information, and be a resource to

families while creating a warm, welcoming, empathetic environment. A Community Group is designed to

create opportunities for families that have children with Down syndrome to network and share common

interests, concerns, challenges, and information.

Each Community Group is considered an extension of the DSAGC, but autonomy and decision making

authority is given to the groups so they can effectively meet their unique purpose and goals for serving

families and individuals in their community. Click here to see a full list of Community Groups.

Birth Year Groups: 2011, 2012, 2013, 2014, 2015, 2016, 2017, 2018 & 2019

Dear Thomas Center Family,

As a family connected to the Thomas Center and Cincinnati Children’s Hospital Medical Center, we wanted to

pass along to you an opportunity to participate in a research study. This study is being conducted by the

Division of Developmental and Behavioral Pediatrics at Cincinnati Children’s Hospital Medical Center. This

study seeks to understand the relationship between behavior and parental stress for children and adolescents

with Down syndrome. The study will include behavioral parent training. The focus of this study is with children

and adolescents ages 3-12, who have Down syndrome and one of their parents. If you are interested in you

and your child participating in this study, please read the information below.

INFORMATION ABOUT THE STUDY

This study will last for 22 weeks and include the following:

You and your child will:

* Come to Cincinnati Children’s for three visits (Screen, Week 10, Week 22) to complete questionnaires and

have him/her evaluated for their cognitive and executive functioning (ability to plan, solve problems, etc.).

You will:

* Come to Cincinnati Children’s to take part in hourly educational sessions for 9 weeks. One additional

optional session will offered.

Parents interested in participation will be given a consent form that thoroughly explains all of the details of the

study. A member of the study staff will review the consent form with you and will be sure that all of your

questions are answered.

To learn more about this research or to sign up for this study, please contact Hilary Rosselot at 513-636-4134

or Hilary.Rosselot@cchmc.org

Thank you for your consideration.

Sincerely,

Anna Esbensen, Ph. D. Rebecca Shaffer, Psy.D

Assistant Professor of Pediatrics Assistant Professor of Pediatrics

The Jane and Richard Thomas Center for Down Syndrome

The Kelly O’Leary Center

Research Studies

$5.7 million NIH Research Funding to

the Thomas Center and Colleagues The Thomas Center for Down Syndrome at Cincinnati Children’s Hospital Medical Center is proud to announce receipt of two federal

research grants supporting children with Down syndrome. Both grants were awarded by the Eunice Kennedy Shriver National

Institute of Child Health and Human Development (NICHD). Anna Esbensen, PhD, Research Director of the Thomas Center,

received a 5-year, $2.6 million grant to continue her work on evaluating cognitive outcome measures for children 6-17 years with

Down syndrome. If you are interested in more information, please contact us as 513-803-3641 or email Emily Hoffman at

Emily.Hoffman1@cchmc.org (see information flyer below). Dr Esbensen is also collaborating with Angela Thurman, PhD, at the

University of California-Davis MIND Institute, on a 5-year, $3.1 million grant to evaluate language outcomes in children 2-8 years with

Down syndrome. More information will be coming soon on how to participate in this project.

Dr. Susan Wiley, co-director of the Thomas Center for Down Syndrome, also partnered with Drs Raouf Amin and Stacey Ishman from

the Divisions of Pediatric Pulmonary Medicine/Sleep Medicine and Pediatric Otolaryngology – Head and Neck Surgery at Cincinnati

Children’s Hospital. They received funding to expand their current study on the neurocognitive and school performance effects of

removal of adenoids and tonsils for snoring to focus on children with Down syndrome. This study will enroll children with Down

syndrome undergoing tonsil and adenoid removal for snoring or sleep apnea. This study includes 7 centers across the U.S.

(Philadelphia, Cleveland, Dallas, Boston, Ann Arbor, Norfolk, and Cincinnati). If you are interested in more information, please contact

us at 513-636-0607 or email Belinda Carter at Belinda.Carter@cchmc.org.

These projects could not have been funded without the strong collaboration between families, the DSAGC and the Thomas Center.

We are honored to work in a city with so many dedicated families, a strong Down syndrome association, and a wonderful partnership

in advancing research to support positive outcomes for individuals with Down syndrome.

mailto:thedndlab@illinois.edu

You are Invited to Participate in a Research Study The purpose of this research study is to learn how parents of children with disabilities seek out and make

sense of information as they address the medical, educational and social concerns of their children.

To participate in this research, you must:

• Be 18 years old or older

• Be the parent and legal guardian of one or more children with at least one physical and/or intellectual

disability

Participation in this study involves:

• Participating in one 90 minute focus group discussion with other parents/guardians

• Coming to the NKU campus or the Down Syndrome Association of Greater Cincinnati offices for one of the

focus group sessions

• Dinner, lunch or breakfast for all participants

• Entry into a drawing for a $25 Target gift card at the focus group session

To find out more about this study, please contact Dr. Zachary Hart at:

• Phone: 859-572-5573

• Email: hartz@nku.edu

You also may sign up directly for a focus group discussion by going to: https://nku.co1.qualtrics.com/jfe/form/

SV_5nAtkYiePsD7xrL

Study Title: A Research Study of Information Seeking and Sensemaking by Parents of Children with

Disabilities

IRB #: 410

Researcher Name: Dr. Zachary Hart

Community Opportunities The DSAGC does not endorse, recommend or support any particular regime,

therapy, activity, camp or treatment. We welcome articles and information from

parents, professionals and other interested parties.

Basketball Opportunity for Children with

Special Needs

What: The Cincinnati Trailblazer homeschool basketball

program is hosting a basketball program for children with

special needs.

Who: Any child of any age who can throw/bounce a bas-

ketball is invited. Children with all types of special needs--

from mild learning disabilities to autism or Down Syndrome

--- are welcome. Each child will be paired with a coach who

is a player on the Cincinnati Trailblazer home-

school basketball team or playing another Trailblazer

sport. Please consider this program if you feel your child can benefit from the exercise, basketball

instruction, and social interaction.

When: Basketball sessions will begin November 1, and last until mid-February. We will practice

every Thursday from 3:00-:4:00 pm.

Where: Sessions will be held at the Landmark Sports Complex (1600 Glendale Milford Road, Cin-

cinnati, Ohio 45215)

Price: There is no charge!

If you are interested, please call Jane Ruwe at 513-314-1542 or email at

janeruwe@gmail.com.

November Character Call Times Announced!

A Moment of Magic is the original 501(c)(3) nonprofit organization that

allows college-age students to volunteer at children’s hospitals and social

service institutions to provide creative programming.

If you have a child that might be interested, the steps are very simple. You just click this link, select a

character (calls are totally free, and you can book as many as you want!), and book a date and time

that works for you (all times are in EST), include your contact information, and we would reserve that

time just for you (all dates and times are first come first serve). Then we would call on that

designated day and time and set up a one on one interaction for that specific child!

Click this link to signup: https://calendly.com/amomentofmagic

http://events.r20.constantcontact.com/register/event?oeidk=a07efpn4a013ca1d673&llr=cfsdkygab

http://www.7hillschurch.tv/

mailto:chenderson@tbh.com

November Calendar

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

1 2

3

Keys for Little

Ones (ages 0 -

2)

Keys for Little

Ones (ages 3 -

5)

4 5 6 7

Gymnastics

(ages 6 - 12)

Baking Skills

(ages 18 &

up)

8 9 10

Keys for Little

Ones (ages 0 -

2)

Keys for Little

Ones (ages 3 -

5)

11

Holiday Crafting

(ages 16 & up)

12 13 14

Gymnastics

(ages 6 - 12)

Baking Skills

(ages 18 &

up)

15 16 17

18

Westside

Ornament

Painting!

TEEN CLUB

19 20 21

22 23 24

25 26 27 28

Gymnastics

(ages 6 - 12)

Baking Skills

(ages 18 &

up)

29 30

Office Closed

December Calendar

Sunday Monday Tuesday Wednesday Thursday Friday Saturday

1

AAFN - Holiday

Celebration

2

Holiday

Party

3 4 5 6

7 8

9

Hispanic

Groupa -

Holiday

Party

10 11 12 13 14 15

16 17 18 19 20 21 22

23 24 25 26 27 28 29

30 31 DSAGC Office Closed