Thursday, June 28, 2012


I came across this amazing post about becoming a mother to a child with Down syndrome.  I have read many interpretations of how it feels and although some are close they are just not always spot on.  We all have our own stories and we all have our own emotions tied to the day of the diagnosis.  After only a year on this journey I have learned some great lessons.  The most important lesson learned is not to feel guilty about the way I felt then, I am here and I am RIGHT NOW and I am in an amazing place with God, my family and with Down syndrome.  My life changed one  summer day in June and thank God it did.



 
 

   
Meeting Her
I remember the feeling.
That first meeting with another family farther along the path of Down syndrome after the birth of our child with the same diagnosis.
I remember fear and fascination.
Fear of the child four or five years old who’s eyes mirrored my baby’s. She shouldn’t have looked like him. I birthed her. She should have resembled me.
Fascination, as I watched his sister play with him; he hit her, she cried, mother reprimanded. So common, so usual, so family. Things I thought we may have lost with the appearance of an extra chromosome.
I cried quietly for two hours while visiting this dear little boy and his family. They loved him. They cherished him. He played games, and communicated with his hands and with his voice. He chowed down on his lunch.
But still, I cried, because this path wasn’t my choice. At my point of weakness his mother appeared strong. I was an anthill. She, a mountain. I clutched my baby to my chest, each second teetering between relief and uncertainty.
His mother was gracious, tender. We whispered to each other as her children played nearby. ”I love him. Our life is good. Really. It is.”
Her smiling eyes met mine.
I looked away.
I loved my baby.
But that day I did not love Down syndrome. It was too big, too unknown.

 

Meeting Her

Your husband contaced us last week.  We scheduled dinner.  The following days you kept popping up in my mind.  A mother forced to move from a typical parenting landscape to some place new, a place everyone claimed was special.  If you are anything like me, shocked by a culture wildly unknown and unsolicied.
“Mom, why are you cleaning up around the house, and making us all put on fresh shirts and brush our hair?” Elaina asked as I set the table. “You usually don’t make such a big deal out of dinner guests.”
Several responses queued on my tongue. Instead, in a brief moment of clarity, understanding that Elaina would learn more from the truth, I responded.
“Because, this family had a baby a few months ago with Down syndrome and I want them to feel welcome. I want them to see that we are happy, and that Papa and I treasure all four of our girls. I want them to see that we are OK.”
Your family arrived. We cooed over both of your children. I held your new baby in my arms. He smelled like sunshine.
His eyes mirrored my daughter’s.
I held your little one to my chest as our children played close by. Polly hit Zoya. Zoya cried which made Evie cry, and Elaina played on the floor with your son.
You probably aren’t excited to be a part of our special needs club. I have to tell you, though, welcoming you into my home was like welcoming family.
You teared up as you talked about your love for your son. “Down syndrome is something different. It’s a lot to take in.”
Oh, how I know.
I am a bit farther down your new path. Give yourself time to fall in love with your son, and to get used to Down syndrome. Breathe in his baby smell. Watch how his brother kisses the top of his head, how your husband gently puts him down to sleep, how your baby locks eyes with you when he eats. The weight of the world is in those eyes.
Today, you don’t have to love Down syndrome. Just love your son.
And know that we, other parents in this very special club, are here when you need us and that someday, you will be the one looking a new mother in the eye saying,
“Our life is good. Really. It is.”



Courtesy of an amazing mother who adopted a loving child from Reece's Rainbow Down Syndrome Adoption Ministry.  You can follow her story at http://www.gillianmarchenko.com/.






Reece's Rainbow

The mission of Reece's Rainbow is to rescue orphans with Down syndrome through the gift of adoption, to raise awareness for all of the children who are waiting in 25 countries around the world, and to raise funds as adoption grants that help adoptive families afford the high cost of adopting these beautiful children.  Please show your support by visiting http://reecesrainbow.org/.



Vision Therapy

 
 Vision therapy is a type of physical therapy for the eyes and brain.  It is a highly effective non-surgical treatment for many common visual problems such as lazy eye, crossed eyes, double vision, convergence insufficiency and some reading and learning disabilities. Many patients who have been told, "it's too late," or "you'll have to learn to live with it" have benefited from vision therapy.
 
In the case of learning disabilities, vision therapy is specifically directed toward resolving visual problems which interfere with reading, learning and educational instruction. Optometrists do not claim that vision therapy is a direct treatment for learning disabilities.



Vision therapy is –

  • a progressive program of vision "exercises" or procedures;
  • performed under doctor supervision;
  • individualized to fit the visual needs of each patient;
  • generally conducted in-office, in once or twice weekly sessions of 30 minutes to an hour;
  • occasionally supplemented with procedures done at home between office visits ("home reinforcement" or "homework");
  • depending on the case, the procedures are prescribed to:
  • help patients develop or improve fundamental visual skills and abilities;
  • improve visual comfort, ease, and efficiency;
  • change how a patient processes or interprets visual information.



Vision Therapy Is Not Just Eye Exercises



Unlike other forms of exercise, the goal of Vision Therapy is not to strengthen eye muscles. Your eye muscles are already incredibly strong. Vision Therapy is not to be confused with any self-directed self-help program of eye exercises which is or has been marketed to the public.
In-office Vision Therapy is supervised by optometric vision care professionals and many types of specialized and/or medical equipment can be used in Optometric Vision Therapy programs, such as:
  • corrective lenses (regulated medical devices);
  • therapeutic lenses (regulated medical devices);
  • prism lenses (regulated medical devices);
  • optical filters;
  • occluders or eye patches
  • electronic targets with timing mechanisms;
  • computer software;
  • balance boards (vestibular device)
  • visual-motor-sensory integration training devices
  • the first step in any Vision Therapy program is a comprehensive vision examination. Following a thorough evaluation, a qualified vision care professional can advise the candidate as to whether Vision Therapy would be appropriate treatment.







  1. Dr Justin Franks in Bryant, AR (501) 847-9797
  2. Dr Franklin  in North Little Rock, AR (501) 758-9500
  3. http://www.visiontherapy.org/

Saturday, June 16, 2012

I Promise...



In honor of our daughter on her 1st birthday we dedicate this website to her for taking us on this amazing journey.  This is our contribution to our new family of special friends and children.


To our daughter:
I promise to always love you, keep you safe and hold you tight,
for you are a tiny miracle, so precious in my sight.
I promise I will smile with pride, at the "firsts" in life you do,
from your first steps, to your first tooth, to your first day of school.
I promise I will teach you, what is important in this life,
to love one another, and to always do what's right.
I promise to be an example, as I am raising you,
so you will see that what I say, is exactly what I do.
I promise I will take the time, just for you and me,
to count the stars in the sky, and build castles by the sea.
I promise I will visit, your teachers at your school,
attend your special programs, and be proud of all you do.
I promise I will help you, improve your homework scores,
and hang all your beautiful pictures on the refrigerator door.
I promise I will meet your friends, and watch you play and run,
have special birthday parties, and count memories one by one.
I promise when you're a teenager, I will try to understand,
when you wear a different hairstyle or follow the latest trend.
I promise life's not easy, it's sometimes hard to make it through,
but I promise you, I will be there to do what I can do.
I promise when you're all grown up, I will look back, and say,
"dear precious little child of mine...how did the time slip away."

Written by Judith Bulock Morse

Happy Birthday and We Love You,
Mom and Dad

Wednesday, June 13, 2012

Where to Start-Oklahoma



OKLAHOMA EARLY INTERVENTION PROGRAM

SoonerStart is Oklahoma’s early intervention program for infants and toddlers with disabilities and developmental delays.

This program is for infants and toddlers through 36 months of age who have developmental delays or have a physical or mental condition such as Down syndrome, cerebral palsy, etc.

There is no direct cost to families for these services, regardless of their income. This program is mandated by federal and state law and is funded through various state and federal sources.

For information on services and how to apply for this program please visit the following sites:



EASTER SEALS


Easter Seals Oklahoma is committed to enhance the quality of life for children and adults with disabilities so they may live with equality, dignity and independence.


701 N.E. 13th Street
Oklahoma City, OK 73104
Phone: (405) 239-2525



MEDICAID WAIVER PROGRAM:
OK In-Home Supports Waiver for Children

Provides habilitation training specialist services, respite, assistive technology, specialized medical supplies, environmental accessibility adaptations and architectural mods, family training, OT/PT, self-directed good and services, specialized medical supplies and assistive technology, specialized medical supplies for individuals w/MR ages 3-17



TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)

Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.
When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.
 
 
 
GENETICS/M.D. SUPPORT IN OKLAHOMA
Genetic CounselingOU Medical CenterOUHCP, Room 12100
1200 N. Phillips
Oklahoma City, OK 73104
(405) 271-8685


Susan Hassed, M.S., CGC, Licensed Genetic Counselor
Program Director and Graduate Liaison
Susan-hassed@ouhsc.edu
 

DOWN SYNDROME ASS. OF CENTRAL OKLAHOMA

DSACO envisions communities where everyone -- including those with disabilities -- is accepted, included, empowered and given the opportunity and choice to create their own happiness and path to success.

 
P.O. Box 892592,
Oklahoma City, OK 73189
405-330-5025
 

DOWN SYNDROME ASSOCIATION OF TULSA
The Down Syndrome Association of Tulsa (DSAT) is a non-profit organization that exists to enhance the lives of individuals with Down syndrome, their families and caregivers. This is accomplished by providing support, encouragement, current information, education, opportunities for socialization and by promoting community recognition of the inherent dignity of all people with developmental disabilities.

P.O. Box 54877,
Tulsa, OK 74155
918-496-1873 (Molly)
918-445-2623 (Mindy)


 
TARC
2516 East 71st St., Suite A
Tulsa, OK 74136-5531
Phone: 918-582-8272                                      
Fax:  918-582-3628

Toll Free (outside Tulsa) 800-688-8272
Email to: tarc@ddadvocacy.net
Online: www.ddadvocacy.net                                                           

Program Email Addresses
ARCCorps:
arccorps@ddadvocacy.net        
OK-AIM:
okaim@ddadvocacy.net     

Oklahoma City Satellite
3800 N. Classen, Suite C30
Oklahoma City OK 73106-5450
405/557-1878
Fax: 405/524-1058


Ada Satellite
124 South Broadway, Suite 307
Ada OK 74820
580/421-9441
Fax: 580/421-9441

Tuesday, June 12, 2012

Where to Start-Oregon




OREGON INTERVENTION PROGRAM

The Oregon Department of Education contracts with local agencies to provide a statewide system of free services for young children with developmental delays and disabilities and their families, including:
  • Early Intervention (EI)--Individually designed services for children birth to three and support for parents to enhance children's physical, cognitive, communication, social or emotional and/or adaptive development;
  • Early Childhood Special Education (ECSE)--Specially designed instruction for children ages 3 to the age of public school eligibility including physical, speech/language, mobility, social or emotional, and others.
http://www.ode.state.or.us/search/results/?id=252

http://www.ode.state.or.us/gradelevel/pre_k/eiecse/dyhcfinalenglish.pdf

Oregon Department of Education
255 Capitol Street NE   Salem, OR 97310-0203
503) 947-5600  |  Fax: (503) 378-5156

University of Oregon Early Intervention Program

http://eip.uoregon.edu/



EASTER SEALS

Easter Seals Oregon provides exceptional services to ensure that children and adults with autism and other disabilities or special needs and their families have equal opportunities to live, learn, work and play in their communities.

503-228-5108 (voice)
503-228-1352 (fax)
800-556-6020 (toll-free)


5757 SW Macadam Ave
Portland OR  97239 




MEDICAID WAIVER PROGRAM:

OR ICF/MR Comprehensive Residential

Provides day hab-prevocational-supported employment, group care homes for adults, group care homes for children, respite, OT, PT, speech/hearing/language, comprehensive in-home support, crisis/diversion, environmental accessibility adaptations, family training, Hab-adult foster care, hab-children's DD foster care, Hab-supported living, non-medical transportation, specialized medical equipment and supplies for individuals w/DD, MR ages 0 - no max age

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OR0117R0400.zip


OR Medically Fragile (Hospital) Model

Provides homemaker/chore, respite, PT/OT/speech and language, behavioral consultant, environmental accessibility adaptations, family training, non-medical transportation, special diets, specialized medical equipment and supplies, translation for medically fragile individuals ages 0-17

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OR40193R0200.zip


OR Behavioral (ICF/MR) Model

Provides homemaker/chore, respite, PT/OT/speech and language, behavioral consultant, environmental accessibility adaptations, family training, non-medical transportation, special diets, specialized medical equipment and supplies, translation for individuals w/MR/DD ages 0-17

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OR40194R0200.zip


TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)

Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.
When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.

GENETICS/M.D. SUPPORT IN OREGON

Down Syndrome Program
The Child Development and Rehabilitation Center
Doernbecher Children's Hospital

700 S.W. Campus Drive, 7th floor
Portland, OR
Phone: 503-346-0640 or 877-346-0640




CENTRAL OREGON DS NETWORK

Their mission is to promote a positive understanding of disability and community inclusion, as well as be a source of support, information, and education for families and professionals.

CODSN will accomplish this mission by empowering and supporting families and individuals who have been touched by disability. We will work to increase education, promote public understanding and acceptance, and encourage full inclusion of individuals with differences in our community.



6390 Southwest Nighthawk Avenue,
Redmond, OR 97756
541-548-8559
codsn1@yahoo.com
http://www.codsn.org/


DS ASSOCIATION OF SOUTHER OREGON
In 1979 a group of parents whose children had Down syndrome formed an organization called the Down Syndrome Parent Association which, in 1993, became the Down Syndrome Association of Southern Oregon. The vision of the founding parents was to provide networking and resources for families and promote positive awareness in our communities.  DSASO remains steadfastly committed to enhancing and expanding the lives of individuals with Down syndrome and plays a vital role in providing education, outreach and support to families throughout the entire Southern Oregon region.

The Goals of DSASO are to:
P.O. Box 5404,
Central Point, OR 97502
541-776-9805
mail@dsaso.org
http://www.dsaso.org/


DOWN SYNDROME NETWORK OREGON

Down Syndrome Network Oregon is a faith-based support group that provides comfort and acceptance for families, friends and individuals with Down syndrome. It is our goal to use community outreach events to create a vision of hope and awareness to demonstrate that every life brings value to the world.

P.O. Box 248,
Marylhurst, OR 97036
503-636-4860
imailto:info@dsnor.org
Paula@dsnor.org
http://www.dsnor.org/



NORTH COAST DOWN SYNDROME NETWORK

Provide support and resources
Encourage active participation in the community
Foster positive attitudes
Help individuals with Down syndrome reach their full potential
“The mission of the North Coast Down Syndrome Network

is to promote community awareness and to build a supportive network
to empower all families and individuals with special needs.”
P.O. Box 456, Nehalem, OR 97131
503-368-6892
northcoastdsn@nehalemtel.net
http://www.northcoastdsn.org/



NORTHWEST DOWN SYNDROME ASSOCIATION

Mission
Create and nurture a loving and inclusive community celebrating every person with Down syndrome.
The NWDSA will accomplish this mission by empowering and supporting families and individuals who have been touched by Down syndrome. They will work to increase education, promote public understanding and acceptance, work toward full inclusion, and defend the civil rights of individuals with Down syndrome. Their vision also embraces professionals and the cross disability community. Their statement of values is the core of their organization and the basis for how they make decisions to support their mission.
They believe that relationships are the cornerstones of their organization and that they should be both honored and nurtured.


P.O. Box 9127,
Portland, OR 97207
503-238-0522
503-238-0522
sholl2000@aol.com
ww.nwdsa.org



WILLAMETTE VALLEY DS ASSOCIATION

P.O. Box 8098,
Salem, OR 97303
503-769-7403 (Patie)
wvdsa.ptaylor@gmail.com
keriprince@gmail.com


OREGON COUNCIL OF DEVELOPEMENT DISABILITIES

Throughout the year, the Oregon Council on Developmental Disabilities listens to people like yourself who have a strong interest in the welfare of Oregonians with developmental disabilities and their families. They hear from you at forums, conferences and town hall meetings...in the media, on the Internet, through Oregon Perspectives and a host of other ways. They hear from:
  • Self Advocates frustrated by the lack of rural and intercity accessible transportation.
  • Direct Care Providers who receive poor pay for demanding jobs.
  • Case Workers swamped with paperwork and heavy case loads.
  • Families and Individuals who feel policy making does not reflect their needs.
  • And many others with individual concerns and issues.
What they hear shapes what they do. Every five years they build a strategic plan based on what they hear from you and the issues facing families and individuals. The plan focuses their efforts in areas where they can be most effective and produce positive results for the largest number of people.

540 24th Place NE
Salem, OR 97301-4517

Email: ocdd@ocdd.org
Calling from Salem:
(503) 945-9941

Calling from elsewhere in Oregon:
(800) 292-4154 (Oregon)

Calling from Outside Oregon:
(503) 945-9941

FAX: (503) 945-9947
Facebook:  http://www.facebook.com/OregonCouncilDD
http://ocdd.org/index.php/ocdd/


THE ARC OF OREGON

The Arc of Oregon, together with its network of members and affiliated chapters, advocates for the rights and full community participation of all children and adults with intellectual and developmental disabilities.



General Information:Info@arcoregon.org
Marcie Ingledue, Executive Director
Email:
Marcie.Ingledue@arcoregon.org
Rose Rowe , Program Assistant
Email:
Rose.Rowe@arcoregon.org
Tiffany Tombleson, Administrative Assistant
Email: Tiffany.Tombleson@arcoregon.org
Elaine Friesen-Strang, Program Director
Guardianship, Advocacy & Planning Services (GAPS)
Email:
Elaine.Strang@arcoregon.org
Lisa Hawke, Bingo Manager
The Arc of Oregon Facility - Eugene
Email:
Lisa.Hawke@arcoregon.org

Where to Start-South Dakota



SOUTH DAKOTA EARLY INTERVENTION PROGRAM


Bright Start (for South Dakota's Children) http://www.sdbrightstart.com
Children's Special Health Services http://www.state.sd.us/doh/Famhlth/child.htm
DAKOTALINK (South Dakota's Assistive Technology Project) http://dakotalink.tie.net
Department of Education (DOE) http://doe.sd.gov/
DOE/Special Education Programs http://doe.sd.gov/oess/specialed/index.asp
Easter Seals - www.easterseals.com
Parent Resource Network http://www.bhssc.org/sdprn/
South Dakota Advocacy Services www.sdadvocacy.com
South Dakota Coalition for Children http://www.sdcchildren.org/
South Dakota Literacy Resource Center http://literacy.kent.edu/~sdakota/
South Dakota Parent Connection www.sdparent.org
State of South Dakota Homepage www.state.sd.us/
Technology & Innovations in Education (TIE) http://www.tie.net
Transition Services Liaison Project http://www.tslp.org/
Transition Tackle box http://www.tslp.org/Tacklebox.htm
USD Center for Disabilities www.usd.edu/cd/
2008 Youth Leadership Forum - link to video http://www.tslp.org/YLF.htm


EASTER SEALS

Currently Easter Seals South Dakota serves in excess of 10,000 children and adults each year, with the number served climbing each year. Children and adults with disabilities and special needs find highest-quality services designed to meet their individual needs when they come to Easter Seals. Whether through a birth condition, injury or illness, or because of functional limitations experienced in aging, Easter Seals South Dakota, services are the first step toward helping people with disabilities gain greater independence.

1351 North Harrison
Pierre, SD
57501
Tel: 605-224-5879




MEDICAID WAIVER PROGRAM:

SD Family Support

Provides case management, personal care, respite, supported employment, companion care, environmental accessibility adaptations, nutritional supplements, specialized medical adaptive equipment an supplies, vehicle mods for individuals w/DD and MR ages 0 - no max age

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/SD0338R0200.zip


SD CHOICES

Provides day hab, provocational, residential hab, service coordination, supported employment, medical equipment and drugs, nursing, other medically related services-speech, hearing & language for individuals w/DD, MR ages 0 - no max age

www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Downloads/SD0044.zip


TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)

Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.
When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.

 

GENETICS/M.D. SUPPORT IN SOUTH DAKOTA

General Genetics – Geneticist on site
Clinic
:
Sanford Children’s Specialty Clinic
1305 West 18th St., Sioux Falls
Description: This Clinic provides comprehensive services in the areas of diagnosis, prevention and management of genetic disorders and birth defects. Care is provided for newborns, children, adolescents and adults with concerns about any form of hereditary disorder. The clinic is staffed by a board-certified geneticist, Dr. Laura Davis Keppen, a board-certified genetic counselor, a registered dietitian, and a registered nurse. The team provides genetic services including diagnosis, evaluation, counseling, and management of genetic and congenital conditions.
Contact: 1-800-850-0064


General Genetics Outreach Clinics
Clinic: Sanford Children’s Specialty Clinic
Sites:


Aberdeen
Contact a genetic counselor at 1-800-850-0064 to arrange an appointment


Pierre
Contact a genetic counselor at 1-800-850-0064 to arrange an appointment


Rapid City
Contact a genetic counselor at 1-800-850-0064 to arrange an appointment


Description of clinic: This Clinic provides comprehensive services in the areas of diagnosis, prevention and management of genetic disorders and birth defects. Care is provided for newborns, children, and adolescents. The clinic is staffed by a board-certified geneticist, a genetic counselor, a registered dietitian, a social worker, and a registered nurse. The team provides genetic services including diagnosis, evaluation, counseling, and management of genetic and congenital conditions.


NEW DIRECTION DOWN SYNDROME ASSOCIATION

New Direction's mission is to provide information about Down syndrome, direction to resources, and networking opportunities.
New Directions strives to enhance the lives of individuals with Down syndrome throughout their lifespan by providing support, information and education to those individuals, their families, and professionals.
New Directions also seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding individuals with Down syndrome.

P.O. Box 90712,
Sioux Falls, SD 57109
605-610-8026
UPS AND DOWNS FAMILY SUPPORT GROUP
P.O. Box 9005,
Rapid City, SD 57709
605-341-0151


 
GRANT COUNTY ARC
310 W 6th Ave
Milbank, SD  57252-2311



OAHE ARC
PO Box 503
Pierre, SD  57501-0503

Business Phone: (605) 224-4501
Chapter Email: cquinn@oaheinc.com




Where to Start-Tennessee



TENNESSEE EARLY INTERVENTION PROGRAM


Tennessee's Early Intervention System is a voluntary educational program for families with children ages birth through two years of age with disabilities or developmental delays.
The principles of Early Intervention (EI) are:
  • The primary goal of EI is to support families in promoting their child’s optimal development and to facilitate the child’s participation in family and community activities.  The focus of EI is to encourage the active participation of families in the intervention by imbedding strategies into family routines.  It is the parents who provide the real early intervention by creatively adapting their child care methods to facilitate the development of their child, while balancing the needs of the rest of the family.
You may make a referral to TEIS by calling 1-800-852-7157, calling the office directly (TEIS SPOE Contact Information download pdf file) or by contacting Robin Crutcher at 615-253-2589 or by email.  If emailing, please write "referral" in the subject line.
Please provide your name, contact information, child's name, date of birth, county the child lives in, parent information (if someone other than the parent calls) and the developmental concern when making a referral.  A service coordinator will make several attempts to contact the parent within five days of the referral by phone and by mail.




EASTER SEALS

The mission of Easter Seals Tennessee is to provide exceptional services to ensure that all people with disabilities or special needs and their families have equal opportunities to live, learn, work and play in their community.

3011 Armory Drive, Suite 100
Nashville, TN  37204

615-292-6640 (Phone)
615-251-0994 (Fax)
615-385-3485 (TDD)

http://tn.easterseals.com




MEDICAID WAIVER PROGRAM:

TN Self-Determination


Provides respite, nursing, nutrition, OT, PT, specialized medical equipment and supplies and assistive technology, speech/lanaguage/and hearing, adult dental, behavior services, behavioral respite, day services, emergency assistance, environmental accessibility mods, individual transportation, orientation and mobility services for impaired vision, personal assistance, PERS for individuals w/MR ages 0 - no max age and DD ages 0-5

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TN0427R0100.zip


TN HCBS Waiver for Persons w/MR


Provides residential hab, respite, support coordination, nursing services, nutrition services, OT, PT, specialized medical equipment and supplies and assistive technology, speech/language/and hearing services, behavior services, day services, dental services, environmental accessibility mods, family model residential support, individual transportation, medical residential services, orientation and mobility services for impaired vision, personal assistance, PERS, supported living, transitional case management, vision services for individuals w/MR ages 0 - no max age

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TN0357R0200.zip




TN HCBS Waiver for MR/DD


Provides residential hab, respite, support coordination, nursing services, nutrition services, OT, PT, specialized medical equipment and supplies and assistive technology, speech/language/and hearing services, adult dental, behavior services, behavioral respite, day services, environmental accessibility mods, family model residential support, individual transportation, medical residential services, orientation and mobility services for impaired vision, personal assistance, PERS, supported living, transitional case management for individuals w/DD ages 0 - 5, and w/MR ages 0 - no max age


https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TN0128R0400.zip


TEFRA: (Tax, Equity and Fiscal Responsibility Act of 1982)

Under the Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA), states may provide Medicaid coverage to children with severe disabilities, disregarding their family income, if these children require care at an institutional (hospital, nursing home or intermediate care facility) level.
When a child receives extended care in an institutional setting, family income is disregarded as a qualification for Medicaid. The TEFRA State Plan Option makes it possible to do the same for a family whose child requires care at the level provided in an institution, but who choose to care for their child at home. Currently, 18 states and the District of Columbia have chosen to implement the TEFRA State Plan Option. Because states vary widely in the availability of institutional care for children and the clinical criteria for admitting children to these institutions, the numbers of children and youth with special health care needs (CYSHCN) who receive Medicaid benefits under this option also varies widely from state to state.

Please check with your state office to see if TEFRA is offered in your state.



GENETICS/M.D. SUPPORT IN MNEW HAMPSHIRE

Down Syndrome Clinic
Vanderbilt Children's Hospital Outpatient Center
5030 MCE
1215 21st Avenue
Nashville, TN
Phone: 615-343-3696



CHATTANOOGA DOWN SYNDROME SOCIETY

CHATTANOOGA DOWN SYNDROME SOCIETY is made up of people who have Down syndrome, their family members, and others who care about them in the Chattanooga region.
They were formerly known as UPPs (United Parents and Professionals) for DownS, although they changed their name a few years ago to become more easily accessible.
They offer periodic mini-conferences on issues pertaining to Down syndrome, send out a newsletter, and also sponsor social events for their membership.

5105 Tennessee Avenue,
Chattanooga, TN 37409
423-825-5450 (Cynthia)
423-618-9408 (Cynthia)
cynthia.young8@gmail.com
http://www.chattanoogadownsyndrome.org/




DS ASSOC. OF MEMPHIS AND THE MID-SOUTH

Began in 1973 as Down's Parents of Memphis. A small group of parents met while attending the first Early Intervention Program in Memphis at the Child Development Center. They began meeting to learn more about Down syndrome and to work to improve public awareness, while providing the most current care for their children. This group of parents went on to begin the early intervention program now known as Special Kids & Families. 
2893 South Mendenhall Road, Suite 3,
Memphis, TN 38115
901-547-7588
director@dsamemphis.org
dsam1@bellsouth.net
http://www.dsamemphis.org/



DOWN SYNDROME ASSOC. OF MIDDLE TENNESSEE

Down Syndrome Association of Middle Tennessee (DSAMT) is the definitive resource in Middle Tennessee for accurate andup-to-date information on Down syndrome and a community resource for self-advocates and their families, educators anddisability professionals.

111 North Wilson Boulevard,
Nashville, TN 37205
615-386-9002
dsamt@bellsouth.net
www.dsamt.org


DOWN SYNDROME ASSOC. OF WEST TENNESSEE

1804 Highway 45 Bypass, Box 110,
Jackson, TN 38308
660-2000
dsawt@att.net
bigutfan69@bellsouth.net
http://www.dsamt.org/


DS AWARENESS GROUP OF EAST TENNESSEE

The Down Syndrome Awareness Group of East Tennessee (DSAG), a volunteer-led 501(c)(3) organization, is a parent-initiated organization developed to provide information and support to families of individuals with Down syndrome (DS) and to raise awareness within the community about the abilities of individuals with DS and the benefits of their inclusion into society.

P.O. Box 53575,
Knoxville, TN 37950
865-202-8867
865-905-2968
dsagtn@hotmail.com
info@dsagtn.org
http://www.dsagtn.org/


FRIENDS (FRIENDS REACHING INSPIRING EDUCATING NEIGHBORS ABOUT DOWN SYNDROME

Our vision is to enhance the quality of life for people with Down syndrome and to increase knowledge and acceptance in the community.
P.O. Box 5677,
Johnson City, TN 37605
276-698-4861 (Sherry)
admin@dsfriends.net
http://www.dsfriends.net/


INTERNATIONAL DS COALITION FOR LIFE

IDSC for Life is dedicated to serving individuals with Down syndrome from conception throughout their lives. We will achieve this by supporting families who have been given a prenatal diagnosis of Down syndrome.  We direct families to accurate and up-to-date information about Down syndrome.   We extend our heartfelt compassion, and hope and healing to parents who who were pressured to terminate, and ended their pregnancy because of a Down syndrome diagnosis and later regret that decision.

Cordova, TN 38018
901-413-2047
idscforlife@gmail.com
http://www.idscforlife.org/


THE ARC OF TENNESSEE

The Arc Tennessee advocates for the rights and full participation of all people with intellectual and/or developmental disabilities. Through our family-based network of members and chapters, we support and empower individuals and families; connect and inform individuals and families; improve support and service systems; influence public policy; increase public awareness; and inspire inclusive communities.

151 Athens Way, Suite 100
Nashville, TN 37228
Phone: (615) 248-5878
Toll Free: (800) 835-7077
Fax: (615) 248-5879