Monday, June 4, 2012

Where to Start-Ohio


OHIO EARLY INTERVENTION PROGRAM


In Ohio, Help Me Grow (HMG) is the statewide, family-centered, coordinated system serving children birth to three years of age who have or are at risk for developmental delays. Any family, regardless of income level, with a concern about the development of their infant or toddler is entitled to an evaluation and assessment to determine eligibility. If a child, under the age of three, has a specified developmental delay or medical condition likely to result in a delay, s/he is eligible for HMG services. To support families in their natural care-giving and nurturing roles, HMG brings together the parents and health, education, and social service professionals. This team writes an Individualized Family Service Plan (IFSP) based on the family's priorities and the child's developmental needs. The IFSP becomes the road map for the services the family and their young child will receive.
Information about Ohio's Help Me Grow Program is available at  www.ohiohelpmegrow.org.
Ohio Department of Health
Help Me Grow
246 North High Street
Columbus, OH 43215
Telephone: (614) 644-8389
Fax: (614) 728-9163
E-mail: BEIS@odh.ohio.gov



EASTER SEALS

Easter Seals of Northern Ohio

Easter Seals has, for more than 90 years provided services to children and adults with disabilities and special needs, and their families.

440.324.6600 (voice)
440.324.6602 (fax)
Or, via regular mail at:
41641 North Ridge Road, Suite D
Elyria, Ohio 44035
http://noh.easterseals.com


Easter Seals of Central and Southeast Ohio



614-228-5523 (voice)
614-443-1848 (fax)
800-860-5523 (toll-free)
Or, via the postal service at:
3830 Trueman Court
Hilliard, Ohio 43026

http://centralohio.easterseals.com

 

MEDICAID WAIVER PROGRAM

OH Individual Options (0231.R03.00)

Provides homemaker/personal care, respite, adaptive and assistive equipment, adult family living, adult foster care, community respite, environmental accessibility adaptations, hab-adult day support, hab-vocational hab, home delivered meals, homemaker/personal care-daily billing unit, interpreter, non-medical transportation, nutrition, remote monitoring equipment, remote monitoring, residential respite, social work, supported employment-adapted equipment, supported employment-community, supported employment-enclave, transportation for individuals w/MR/DD ages 0 - no max age


http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Downloads/OH0231.zip


OH Transitions DD (0383.R02.00)

Provides adult day health center services, personl care aide services, emergency response, home delivered meals, home mods, out-of-home respite, supplemental adaptive and assistive devices, supplemental transportation, waiver nursing services for individuals w/autism, MR, DD ages 0 - no max age


https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/OH0383R0200.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 OHIO 

Dept of Developmental Pediatrics
The Children's Medical Center
1 Children's Plaza
Dayton, OH
Phone: 937-641-5487



The Jane and Richard Thomas Center for DS
3333 Burnett
Cincinnati, OH
Phone: 513-636-0520



Blick Clinic for Developmental Disabilities
640 W. Market St.
Akron, OH
Phone: 330-762-5425



Down Syndrome Clinic
Rainbow Babies and Children's Hospital
10524 Euclid Ave, Suite 3150
Cleveland, OH
Phone: 216-844-3230



Down Syndrome ClinicNationwide Children's Hospital
Section of Developmental-Behavioral Pediatrics
700 Children�s Drive
Columbus, OH
Phone: 614-722-4050



DOWN SYNDROME ASSOC. OF CENTRAL OHIO

The Down Syndrome Association of Central Ohio (DSACO) is the leading source information, support and referral assistance to families throughout 16 central Ohio counties. Our mission is to support families, promote community involvement and encourage a lifetime of opportunities for people with Down syndrome.
Our vision is for people with Down syndrome to achieve their fullest potential in an accepting and inclusive community. Get involved and do your part to show the world we are more alike than different!

510 East North Broadway,
Columbus, OH 43214
614-263-6020
info@dsaco.net
nwhetstone@dsaco.net
http://www.dsaco.net/



DOWN SYNDROME ASSOC. OF GREATER CINCINNATI

Mission:  To empower individuals, educate families, enhance communities and together, celebrate the extraordinary lives of people with Down syndrome.

644 Linn Street, Suite 1128
Cincinnati, OH 45203
513-761-5400
dsagc@dsagc.com
janet@dsagc.com
http://www.dsagc.com/



DOWN SYNDROME ASSOC. OF GREATER TOLEDO

Mission: 
 Promote awareness
 Self-advocacy
 Self-determination
 Provide family support
 Provide education and resources
 Parent education
 Support Inclusion


P.O. Box 298,
Sylvania, OH 43560
419-536-4321
information@dsagt.org
http://www.dsagt.org/



DOWN SYNDREOME ASSOC. OF THE VALLEY

Mission: 
To provide support, advocacy, resources, education and opportunity for those with Down syndrome and their families.

945 Boardman-Canfield Road, Suite 12,
Boardman, OH 44512
330-726-3728
info@dsav.org
http://www.dsav.org/



DOWN SYNDROME SUPPORT NETWORK OF STARK COUNTY

The mission of the Down Syndrome Support Network is to provide support, advocacy, education, and resources that will empower families and persons with Down syndrome; to link families with agencies and services, both locally and nationally, that will enable families to provide the best care, early intervention and education to their child.

c/o Walsh University Box 1246,
2020 East Maple Street Northwest,
North Canton, OH 44720
330-361-0587
dssnstarkcounty@aol.com
http://dssnstark.com/




MIAMI VALLEY DOWN SYNDROME ASSOCIATION

MVDSA was established in 1977 as a non-profit organization of families and professionals working together to improve the quality of life for persons with Down syndrome and their families throughout the greater Miami Valley.

1133 South Edwin C. Moses Boulevard,
Suite 190,
Dayton, OH 45408
937-222-0744
office@mvdsa.org
president@mvdsa.org
http://www.mvdsa.org/



OHIO VALLEY DOWN SYNDROME SUPPORT GROUP

104 Westfall Lane,
Richmond, OH 43944
740-765-5268
cjsentich@aol.com



PUTTING DOWN FIRST

Mission: 
  • To offer encouragement to new and expectant parents through education, loving support, and hope for the future.
  • To provide families, friends and people touched by Down syndrome information, support, and friendship.
  • To further education and awareness of the benefits for inclusion of persons affected by Down syndrome in our society.

  • P.O. Box 81,
    Southington, OH 44470
    330-507-0888
    330-502-1098
    puttingdowns1st@aol.com
    http://www.puttingdownsfirst.org/



    RISING UP TO DOWN

    Eleanor S. Weiant Center,
    116 North 22nd Street,
    Newark, OH 43055
    740-344-6921
    family_support@yahoo.com



    UP SIDE OF DOWNS OF GREATER CLEVELAND

    The Up Side of Downs exists to provide support, education and advocacy for people with Down syndrome, their families and communities throughout Northeast Ohio.

    They invite you to connect with our on-line family support network, to join us at one of our many programs, do research in our comprehensive resource directory, or enjoy the photos in our photogallery and so much more.

    23230 Chagrin Boulevard, Suite 640,
    Beachwood, OH 44122
    216-464-USOD (8763)
    info@theupsideofdowns.org
    http://www.theupsideofdowns.org/




    UPS AND DOWN TRI STATE DS SUPPORT GROUP

    220 7th Street,
    Wellesville, OH 43968
    330-532-3684
    nikkiatri@comcast.net



    THE ARC OF OHIO

    The Arc of Ohio is a statewide membership association made up of people with intellectual and developmental disabilities, their families, friends, interested citizens and professionals in the disability field. Together with our individual members and local chapters, we represent more than 330,000 Ohioans with intellectual and developmental disabilities and their families.      

    1335 Dublin Road Suite 205-C
    Columbus OH 43215
    614-487-4720 800-875-2723

    Sunday, June 3, 2012

    Where to Start-Pennsylvania



    PENNSYLVANIA EARLY INTERVENTION PROGRAM

    Early Intervention supports and services are designed to meet the developmental needs of children with a disability as well as the needs of the family related to enhancing the child's development in one or more of the following areas:

    • Physical development, including vision and hearing
    • Cognitive development
    • Communication development
    • Social or emotional development
    • Adaptive development

    Pennsylvania Department of Education
    333 Market Street
    Harrisburg, PA 17126 (
    Map)

    Main Information Number: 717-783-6788 


    EASTER SEALS

    Easter Seals Southeastern Pennsylvania


    215-879-1000 (voice)
    215-879-8424 (fax)
    Or, via regular mail at:
    3975 Conshohocken Avenue
    Philadelphia, PA 19131

    Easter Seals Central Pennsylvania

    Easter Seals provides exceptional services to ensure that all people with disabilities have equal opportunity to live, learn, work and play.

    <><> <><> <><> <><> <><>


    map of locations

    Central Region 1. Altoona, PA
    North Central Region
    2. State College, PA

    South Central Region
    3. Chambersburg, PA

    4. Mechanicsburg, PA
    5. Waynesboro, PA
    6. York, PA
    For mailing addresses, see our Locations page. For more information, please contact us.




    http://centralpa.easterseals.com


    Easter Seals Eastern Pennsylvania


    1501 Lehigh Street, Suite 201
    Allentown, Pennsylvania 18103
    Phone: 610.289.0114
    Fax: 610.289.4282

    For service site contact information, click here.

    http://esep.easterseals.com


    Easter Seals Western Pennsylvania

    To create solutions that change lives of children and adults with disabilities and other special needs.

    412-281-7244 (voice)
    412-281-9333 (fax)
    800-587-3257 (toll-free)
    Or, via regular mail at:
    2525 Railroad Street
    Pittsburgh, PA 15222-4608

     
    MEDICAID WAIVER PROGRAM:

    PA Consolidated Waiver (0147.R04.00)

    Provides education support, home and community hab, homemaker/chore, licensed day hab, prevocational, residential hab, respite, supported employment-job finding/support, supports coordination, nursing, therapy services, supports broker services, assistive technology, behavioral support, companion, home accessibility adaptations, home finding, specialized supplies, transitional work, transportation, vehicle accessibility adaptations for individuals w/MR ages 3-no max age

    http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Downloads/PA0147.zip


    PA Person/Family Directed Support (0354.R02.00)

    Provides education support services, home and community hab, homemaker/chore, licensed day hab, prevocational, respite, supported employment, supports coordination, unlicensed residential hab, nursing services, therapy services, supports broker, assistive technology, behavioral support, companion, home accessibility adaptations, home finding, specialized supplies, transitional work, transportation, vehicle accessibility adaptations for persons w/MR ages 3-no max

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/PA0354R0200.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 Center
    Children's Hospital of Pittsburgh
    Children's Hospital Drive
    45th St. & Penn Ave.
    Pittsburgh, PA
    Phone: 412-692-7963


    Children's Hospital of Philadelphia
    34th Street and Civic Center Boulevard
    Philadelphia, PA
    Phone: 267-426-5283


    Eastern Penn. Down Syndrome Center
    PO Box 60
    6900 Hamilton Blvd.
    Trexlertown, PA
    Phone: 610-402-0184


    Dr. Gertrude A. Barber Center
    136 East Avenue
    Erie, PA
    Phone: 814-453-7661




    ABILITIES

    700 Maple Grove Drive,
    Moscow, PA 18444
    Telephone: 570-840-6961 (Kimberly)

    abilities21@yahoo.com


    BUCKS COUNTY DS INTEREST GROUP

    Kintnersville, PA 18930
    215-766-0890

    dgsantoro@gmail.com
    mdrenth@drenth.com
    www.bcdsig.org



    CENTRAL PA DOWN SYNDROME AWARENESS GROUP

    Central PA Down Syndrome Awareness Group is committed to the success of individuals with Down Syndrome. By promoting acceptance and awareness in our community we can empower individuals with Down syndrome to meet and exceed their dreams.

    175 Briarwood Lane,
    Carlisle, PA 17015
    717-218-0242

    www.cpadsag.org
    cpadsag@comcast.net
    cpadsag.org


    CENTRE COUNTY DOWN SYNDROME SOCIETY

    Welcome to the web site of the Centre County Down Syndrome Society (CCDSS), an affiliate of the National Down Syndrome Society and the National Down Syndrome Congress. The CCDSS was organized by a group of families in the Centre County PA region who recognized a need for, and wanted to provide, a local informational and support resource network. This site has been designed as a resource for families who have received either a prenatal (during pregnancy),postnatal (after birth) diagnosis of Down Syndrome, adopted a child with Down syndrome as well as for healthcare professionals seeking to provide their patients with more informed, comprehensive service.

    P.O. Box 825,
    State College, PA 16804

    ccdssociety@gmail.com
    www.centrecountydownsyndrome.org



    CHESTER COUNTY DS INTEREST GROUP

    The Chester County Down syndrome Interest Group (CCDSIG) is a nonprofit organization that began in 1998 with a group of parents who wanted to meet for social contact and support. They are students, they are lawyers, the are teachers, they are scientists, they are tradesmen, they are bankers, they are homemakers, they are doctors; they are all people whose lives have been touched by Down syndrome. Their goals have now expanded to include reaching out to new families, providing educational and social opportunities for existing members, and educating the community in order to promote awareness and inclusion of persons with Down syndrome.

    P.O. Box 258,
    Exton, PA 19341
    610-889-0291

    board@ccdsig.org
    www.ccdsig.org


    DOWN SYNDROME ASSOCIATION OF PITTSBURGH

    The Down Syndrome Association of Pittsburgh is a group of parents and professionals dedicated to enriching the lives of people with Down syndrome. The mission of the DSAP is simple. We are here to support families by providing: New Parent Packets to families beginning their journey; financial support to the Down Syndrome Center at Children’s Hospital of Pittsburgh of UPMC for both the pediatric and adult clinics, two clinics established due to the generosity of DSAP members; and contributions to the community resources and national endeavors that focus on improving the well-being of people with Down syndrome. 

    5513 William Flynn Highway,
    400, PMB 283,
    Gibsonia, PA 15044

    www.dsapgh.org



    DOWN SYNDROME GROUP OF ERIE COUNTY

    P.O. Box 9426,
    Erie, PA 16505
    814-833-2143

    lupo12345@aol.com


    DS INTEREST GROUP OF DELEWARE COUNTY

    Mission Statement
    • To Reach out to expectant and new parents of a child with Down Syndrome in the manner of Parent to Parent.
    • To be supportive of and provide social interaction for people with Down Syndrome, their families, friends and acquaintances.
    • To aid and challenge each family to constantly evaluate and re-think how new ideas, information and technology may help or affect their child with Down Syndrome.
    • To educate the general public by assisting members of our community in learning to see people with disabilities as people, not as their disability.
    • As a group, we respect individual choices regarding the education, living arrangements and employment choices made by the individual members of the group. We recognize that each family is doing their best to provide for their child and that no one knows their child better that they do themselves.

    P.O. Box 5367,
    Springfield, PA 19064
    610-544-4025

    welcome@delcodsig.org
    michael.evenosky@delcodsig.org
    www.delcodsig.org


    DS INTEREST GROUP OF MONTGOMERY COUNTY

    Montgomery County Down Syndrome Interest Group (MCDSIG) is a nonprofit group without member dues.
    We exist to support individuals with Down syndrome and their families and friends through mutual support and guidance, and to assist in increasing the overall social understanding and acceptance of Trisomy 21.

    608 Ederer Lane,
    Ambler, PA 19002
    610-754-1483

    RoseHTownsend@yahoo.com
    www.mcdsig.org


    DS RESEARCH ONLINE ADVOCACY GROUP

    The Down Syndrome Research Online Advocacy Group is a non- profit scientific and educational effort aimed at increasing public understanding and support for clinical and biomedical research into Down syndrome.


    The DSResearch Online Advocacy Group is an affiliate member of the National Down Syndrome Society.
    811 William Thomas Drive,
    Kennett Square, PA 19348
    610-347-1874

    bobs1012@aol.com
    ds_info@dsresearch.org
    www.downsyndromeresearch.org


    DOWN SYNDROME SOCIETY OF CENTRAL PENNSYLANIA

    P.O. Box 1017,
    Carlisle, PA 17013


    DS SUPPORT GROUP OF LANCASTER COUNTY

    117 Pearl Street,
    Lancaster, PA 17603
    717-393-4455

    ldyjayne66@msn.com



    EASTER PENNSYLVANIA DOWN SYNDROME CENTER

    6900 Hamilton Boulevard,
    P.O. Box 60,
    Trexlertown, PA 18087
    610-402-0184

    theepdsc@gmail.com
    http://epdsc.org


    FRIENDS AND FAMILY OF DOWN SYNDROME

    c/o ARC of Blair County,
    431 Jackson Avenue,
    Altoona, PA 16602
    814-946-1011

    AngelaBucher92@gmail.com


    FRIENDS OF TRISOMY 21 CENTER

    408 Midland Avenue,
    Wayne, PA 19087
    610-989-0961

    davisphily@comcast.net


    HOPES AND DREAMS FOUNDATION

    517 Cedarbrook Road,
    Southampton, PA 18966
    215-264-2859

    info@hopesanddreamsfoundation.org
    www.hopesanddreamsfoundation.org



    LUZERNE COUNTY DOWN SYNDROME NETWORK

    The Luzerne County Down Syndrome Network came together in 2005 with the goal of organizing Luzerne County's first annual Buddy Walk. Through events such as the National Down Syndrome Society’s Buddy Walk, LCDSN’s mission is to advance acceptance and inclusion of people with Down Syndrome while raising funds for qualified local and national non-profit education, research and support programs. The LCDSN hopes to serve as an advocate for those individuals while promoting awareness throughout our communities. The network welcomes not only parents who have children with Down Syndrome, but also relatives, friends and any members of the community who want to be involved. 

    18 W. Linden Street,
    Wilkes Barre, PA 18702
    570-287-0854

    all@luzernecountydownsyndromenetwork.org
    www.downsyndromenetwork.org



    PARENTS OF DS OF NORTHEASTER PENNSYLVANIA

    The Arc of NEPA, PODS of NEPA,
    115 Meadow Avenue,
    Scranton, PA 18505
    570-346-4010
    570-585-2962

    finnertyk@comcast.net
    www.thearcnepa.org/pods.html


    POCONO PARENTS OF DOWN SYNDROME (PPODS)
    The Pocono Parents Of Down Syndrome, (PPODS), is a northeastern Pennsylvania non-profit family and community based organization.  Their purpose is to help parents, families, friends, professionals, and persons with Down Syndrome by providing current resources for medical information, family support services, community based services and educational services. Public awareness, education and advocacy are strengthened through our association and commitments to the N.D.S.S. and Buddy Walk organizations.

    Their goals are to develop and implement programs that will further enhance the lives of individuals with Down Syndrome by helping them to reach their fullest potential. These are achieved through family support, community awareness, social integration and educational enrichment.

    12612 Big Bear Drive,
    East Stroudsburg, PA 18302
    570-476-1269

    mabett0717@yahoo.com.mx
    www.theppods.org


    T21 CLUB OF THE DELAWARE VALLEY

    Vision
    The diversity of individuals in our society enriches the lives of the people in every community. We can demonstrate this on a large scale by engaging communities in events and activities that expose them to human diversity in ways that are both fun and fulfilling. Ultimately, we will foster communities of acceptance, equality, and compassion.

    1118 Grant Avenue,
    Philadelphia, PA 19115
    215-990-8730

    t21club@comcast.net
    www.t21clubofthedelawarevalley.org


    UPS & DOWN & ALL AROUND

    2800 Nestling Road,
    Philadelphia, PA 19154
    215-990-8730

    jh5366@comcast.net
    www.freewebs.com/upsanddownsandallaround


    YORK AREA DOWN SYNDROME ASSOCIATION

    PO Box 7153
    York, PA  27404

    yadsagroup@gmail.com

    www.yadsa.org

    Monday, May 28, 2012

    Where to Start-South Carolina




    SOUTH CAROLINA EARLY INTERVENTION

    Early Intervention is a family-focused, in-home service for children from birth to age 6 years of age. An Early Interventionist helps families understand their child’s development and gives specific training to assist the family in addressing these areas of delay. Family Training and Service Coordination are provided in accordance with an Individualized Family Service Plan (IFSP) for children birth to 3 or a Family Service Plan (FSP) for children 3 to 6 years of age. Click here for Developmental Screening Information.

    The Official Web Site of the State of South Carolina
    1301 Gervais Street, Suite 710
    Columbia, SC29201-3326

    Work1.866.340.7105
    Work 1.803.771.0131







    EASTER SEALS


    Providing exceptional services to ensure children with disabilities or special needs have equal opportunities to live, learn, work and play in their communities since 1934.

    803-256-0735 (voice)
    803-356-6902 (fax)

    Or, via regular mail at:
    PO Box 5715
    Columbia, SC 29250







    MEDICAID WAIVER PROGRAM:


    SC Medically Complex Children

    Provides care coordination, in-home skilled respite, children's medical day care, incontinence supplies for medically fragile and technology dependent individuals ages 0-18

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/SC0675R0000.zip


    SC Community Supports

    Provides adult day health care, personal care, respite care, adult day health care-nursing, adult day health care-transportation, behavior support, career preparation, community services, day activity, employment services, environmental mods, in-home support, private vehicle mods, psychological services, specialized medical supplies/ equipment/assistive technology and appliances, support center services for individuals w/MR ages 0 - no max age

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/SC0676R0000.zip


    SC Pervasive Developmental Disorder (0456.R01.00)

    Provides service coordination, early intensive behavioral intervention for children w/autism ages 3 - 10

    /Medicaid-CHIP-Program-Information/By-Topics/Waivers/Downloads/SC0456.zip


    SC MR and Related Disabilities (0237.R04.00)


    Provides adult day health care/adult day health care services, personal care 2/personal care 1, residential hab, respite care, adult dental, adult vision, audiology services, prescribed drugs, adult attendant care, adult companion, adult day health care nursing, adult day health care transportation, behavior support, career preparation, community services, day activity, employment services, environmental mods, nursing, PERS, private vehicle mods, psychological services, specialized medical equipment/supplies and assistive technology, support center services for individuals w/MR ages 0 - no max age

    http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Downloads/SC0237.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

    Greenwood Genetic Center
    1 Gregor Mendel Circle
    Greenwood, SC
    Phone: 864-941-8100 or
    888-GGC-GENE (Toll Free)


    Medical University of So. Carolina Children's Hospital

    Down Syndrome Center
    135 Rutledge Avenue
    Charleston, SC
    Phone: 843-876-1524







    DOWN SYNDROME ASSOCIATION OF THE LOWCOUNTRY

    The purpose of Down Syndrome Association of the Lowcountry (DSAL) is to promote an enviroment which fosters the growth and developement of people with Down syndrome to enable them to achieve their full potential.  Down Syndrome Association of the Lowcountry offers programs such as Moms' Night Out and Youth Group, as well as social events, resources, and educational opportunities.



    P.O. Box 2275,
    Mount Pleasant, SC 29465
    843-553-DSAL (3725)

    DSALowcountry@gmail.com
    www.dsalowcountry.org






    DOWN SYNDROME FAMILY ALLIANCE OF GREENVILLE

    The Down Syndrome Family Alliance of Greenville is a non-profit organization whose mission is to enrich the lives of people affected by Down Syndrome by providing support and education through the sharing of ideas and resources and promoting awareness and community involvement.


    29 North Academy Street,
    Greenville, SC 29601
    864-282-0167

    support@dsfagreenville.org
    mosleyad@aol.com
    www.dsfagreenville.org




    FAMILY CONNECTION OF SOUTH CAROLINA

    The mission of Family Connection of South Carolina is to strengthen and encourage families of children with special healthcare needs through parent support.
    In 1989 a group of South Carolina parents who have children with disabilities and special needs founded the community based, family-focused organization, Family Connection of South Carolina, Inc (FCSC). Those families realized the source of their families' hope and strength for the future of their children came from other parents who had already successfully navigated life's similar challenges. Therefore, all of our programs and services are centered on the concept of parent-to-parent support or the fact that families with shared experiences are uniquely qualified to help each other.

    2712 Middleburg Drive, Suite 103-B,
    Columbia, SC 29204
    803-252-0914
    803-799-8017

    info@familyconnectionsc.org
    jackierichards@familyconnectionssc.org
    www.familyconnectionsc.org




    UP WITH DOWNS

    111 Sugarpine Place,
    Summerville, SC 29483
    843-695-8381
    843-693-5525

    upwithdowns@ymail.com
    shione964@aol.com
    upwithdownssc@groups.facebook.com 




    THE ARC OF SOUTH CAROLINA

    3214 Leaphart Road, Suite C, West Columbia, SC 29169

    Phone # (803) 748-5020
    Fax # (803) 750-8121

    Where to Start-Texas



    TEXAS EARLY INTERVENTION PROGRAM


    ECI is a statewide program for families with children, birth to three, with disabilities and developmental delays. ECI supports families to help their children reach their potential through developmental services. Services are provided by a variety of local agencies and organizations across Texas.

    Department of Assistive and Rehabilitative Services
    4800 N. Lamar Blvd.
    Austin, Texas 78756

    DARS Disability Determination Services
    P.O. Box 149198
    Austin, TX 78714-9198


    DARS.Inquiries@dars.state.tx.us

    For information on
    • Early childhood intervention services
    • Rehabilitation services
    • Services for people who are deaf or hard of hearing
    • Services for people who are blind or visually impaired
    • Disability determination services
    1-800-628-5115 or TTY 1-866-581-9328


    http://www.dars.state.tx.us/ecis/






    EASTER SEALS


    Easter Seals Central Texas

    Easter Seals Central Texas provides exceptional services so people with disabilities and their families can fully participate in their communities.

    512-478-2581 Phone
    512-476-1638 Fax

    Or, via regular mail:
    Easter Seals Central Texas
    1611 Headway Circle - Building 2
    Austin, TX 78754



    Easter Seals North Texas

    Creating opportunities that advance the independence of individuals with disabilities and other special needs.

    Fort Worth Center

    817-332-7171 (voice)
    817-332-7601 (fax)
    888-617-7171 (toll-free)

    Carrollton Center

    972-394-8900 (voice)
    972-394-6266 (fax)
    888-617-7171 (toll-free)

    Or, via regular mail at:

    1424 Hemphill Street
    Fort Worth Texas 76104


    Easter Seals East Texas

    Easter Seals East Texas Inc.’s mission is to provide exceptional services to ensure that all people with disabilities, special needs or functional limitations have equal opportunities to live, learn, work and play in their communities.

    979-776-2872 (Bryan voice)
    903-794-2705 (Texarkana voice)
    979-776-1456 (Bryan fax)
    903-793-1203 (Texarkana fax)
    903-793-0086 (Texarkana tdd)

    Or, via regular mail at:

    Brazos Valley Rehabilitation Center,
    1318 Memorial Drive, Bryan, TX 77802
    Temple Memorial Rehabilitation Center,
    1315 Walnut Street, Texarkana, TX 75501







    MEDICAID WAIVER PROGRAM:

    TX Medically Dependent Children Program (0181.R04.00)

    Provides respite, adaptive aids, adjunct support, FMS, minor home mods, transition assistance for medically fragile individuals ages 0 - 20

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TX0181R0400.zip


    TX Youth Empowerment Services (YES) (0657.R00.00)

    Provides respite, adaptive aids and supports, community living supports, family supports, minor home mods, non-medical transportation, paraprofessional services, professional services, specialized psychiatric observations, supportive family-based alternatives, transitional services for individuals w/SED ages 3-18

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TX0657R0000.zip


    TX HCBS Program (0110.R05.00)

    Provides case management, day hab, respite, supported employment, prescription, FMS, support consultation, adaptive aids, dental treatment, minor home mods, residential assistance (foster/companion care, supervised living, residential support), skilled nursing, specialized therapies (speech and language pathology, audiology, OT, PT, dietary, behavioral supports, social work), supported home living for individuals w/MR/DD ages 0 - no max age

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TX0110R0500.zip


    TX Community Living Assistance & Support Services (0221.R04.00)

    Provides adult day health, case management, prevocational, residential hab, respite, supported employment, adaptive aids/medical supplies, dental, OT, PT, prescriptions, skilled nursing, speech/hearing/language, FMS, support consultation, behavioral support, continued family services, minor home mods, specialized therapies, support family services, transition assistance for individuals with DD ages 0 - no max age

    https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/TX0221R0400.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 TEXAS
     
    Santa Rosa Health Care
    Birth Defects Clinic
    Children's Hospital
    519 W. Houston Street
    San Antonio, TX
    Phone: 210-704-2387

    Down Syndrome Clinic
    Children's Medical Center of Dallas, 4th Floor

    1935 Motor Street
    Dallas, TX
    Phone: 214-648-8996
    Cook Children's Hospital
    1300 W. Lancaster
    Ft. Worth, TX
    Phone: 817-335-3207 or 800-266-5514
    Down Syndrome Clinic of Houston
    Texas Children's Hospital, Clinical Care Center
    6621 Fannin, Suite CCC 1530
    Houston, TX
    Phone: 832-822-3478
    Children's Hospital of Austin
    Specialty Clinics, One Children's Place
    1400 IH 35
    Austin, TX
    Phone: 512-324-8838
    Adolescent and Young Adult DS ClinicTransitional Medicine Clinic
    Baylor Clinic
    6620 Main St., Suite 1250
    Houston, TX
    Phone: 713-798-0216





    BUDS (BETTER UNDERSTANDING OF DOWN SYNDROME)

    BUDS purpose is to:
    Educate, inform and support families who have loved ones with Down syndrome.
    Provide support and encouragement to new parents of babies with Down syndrome.

    Organize educational and social opportunities for individuals with Down syndrome and their families that help encourage social and physical development.

    Give important, current information and support to our families through our quarterly newsletter, website, and e-mail updates.

    Promote literacy and lifelong learning opportunities for individuals with Down syndrome of all ages.

    5618 84th,
    Lubbock, TX 79424
    806-794-1366

    buds@budsonline.net
    llowe@budsonline.net
    www.budsonline.net



    DOWN BY THE BORDER


    The mission of Down by the Border is to enhance the quality of life and provide support to persons with Down syndrome and their families through promotion of public awareness, advocacy and information sharing with a distinct goal in mind to help individuals with Down syndrome fulfull their dreams and life aspirations.

    15 West Madison, Suite A,
    Brownsville, TX 78520
    956-541-2085

    zariahzarate@yahoo.com
    www.downbytheborder.org




    DOWN SYNDROME ASSOCIATION OF BRAZOS VALLEY

    2910 Horseback Court,
    College Station, TX  77845
    979-778-7010

    dsabv@yahoo.com
    www.downsyndromeofbcs.com



    DOWN SYNDROME ASSOCIATION OF CENTRAL TX


    Mission is to provide education, support, and resources to individuals with Down syndrome, their families and professionals and the community while building public awareness and acceptance of the abilities of individuals with Down Syndrome.

    3710 Cedar Street, Box 3,
    Austin, TX 78705
    512-451-3110

    info@dsact.com
    www.dsact.com



    DOWN SYNDROME ASSOCIATION OF EL PASO

    The Down Syndrome Association of El Paso was established in 2007. The primary purpose of our organization is to provide support and education to families who have children with Down Syndrome. Down Syndrome is a chromosomal abnormality which affects people of all ages, races and economic levels.

    3124 Tierra Agave,
    El Paso, TX 79938
    915-269-5552

    dsaofelpaso@yahoo.com
    http://dsaep.org



    DOWN SYNDROME ASSOCIATION OF HOUSTON


    The Down Syndrome Association of Houston (DSAH) has been an important part of the Greater Houston community for almost 40 years. What started out as a small group that met in the basement of Texas Children’s Hospital has grown into a thriving, multi-faceted program with our office located at 7015 W. Tidwell, Bldg. G, Suite 108, in Houston and more than 1,500 members from all over the Houston area. DSAH has branched out into community groups in Baytown, Katy, North Side, Pearland, Spring, and The Woodlands, and others are forming.

    7015 West Tidwell, Building G, Suite 108,
    Houston, TX 77092
    713-682-7237

    info@dsah.org
    president@dsah.org
    www.dsah.org



    DOWN SYNDROME ASSOCIATION OF SAN ANTONIO

    Down Syndrome Association of San Antonio's mission is to provide services and support for children and adults with Down syndrome and their families in San Antonio and the surrounding areas.
    Through partnerships with other agencies, medical professionals, educators, and parents, the DSASTX gathers and shares resources and information for those with Down syndrome and their families.
    The DSASTX provides opportunities for families to foster friendships and offer mutual support through Parent Support Group meetings, community-based social activities, special events, and educational programs.

    4702 West Avenue, Suite 6,
    San Antonio, TX 78213
    210-349-4372

    downsynassc@dsasa.org
    tmauldin@dsasa.org
    www.dsasa.org




    DOWN SYNDROME FOUNDTION OF SOUTH TEXAS

    744 CR 245,
    Hallettsville, TX 77964
    361-772-6053

    downsyndromefoundation@yahoo.com




    DOWN SYNDROME GUILD OF DALLAS

    What is the Mission of the Down Syndrome Guild (DSG)? To provide accurate and current information, resources and support for people with Down syndrome, their families and the community.               

    1702 North Collins Boulevard, Suite 170,
    Richardson, TX 75080
    214-267-1374

    dsged@sbcglobal.net
    www.downsyndromedallas.org





    DOWN SYNDROME LEAGUE OF VICTORIA

    P.O. Box 4002,
    Victoria, TX 77903

    http://www.facebook.com/pages/Down-Syndrome-League-of-Victoria/136629947106




    DOWN SYNDROME PARTNERSHIP OF TARRANT COUNTY

    The Down Syndrome Partnership of Tarrant County benefits the lives of people with Down syndrome and their families by providing information, social and educational activities and support designed to help achieve the universally desired goals of self-fulfillment, pride in one’s achievements and acceptance and inclusion in the community.

    1300 West Lancaster Avenue, Suite 227,
    Fort Worth, TX 76102
    817-390-2970

    info@dsptc.org
    www.dsptc.org




    EAST TEXAS DOWN SYNDOME GROUP

    The East Texas Down Syndrome Group provides information, education, and moral support to families in East Texas. Our biggest activity of the year is a “Buddy Walk” affiliated with the National Down Syndrome Society. This is a fundraiser for our group. The purpose of the walk is to get our families and the community involved to promote acceptance and inclusion of people with Down syndrome. There are many activities throughout the year that allow our families to get together and share our experiences with each other and build friendships. There are bi-monthly meetings to discuss ideas for fellowship, education opportunities for our members, guest speakers or training opportunities, a Spring Fling Family Picnic, a New Member Coffee, and play-dates for toddlers, youth and teen outings, & special gatherings for our adults.
    P.O. Box 6604,
    Longview, TX 75608
    903-757-3516

    info@etdsg.org
    lmack@etdsg.org
    www.etdsg.org




    GREATER CLEAR LAKE FAMLIES EXPLORING DOWN SYNDROME

    The mission of GCLFEDS is to provide support and resources to individuals with Down syndrome and their families and to promote awareness, understanding and inclusion in their communities.
    4202 Cedar Ridge Trail,
    Houston, TX 77059
    832-457-2775

    gclfeds@clearlakeds.org
    www.clearlakeds.org




    HEART OF TEXAS NETWORK FOR DOWN SYNDROME

    Heart of Texas Down syndrome Network is a nonprofit organization committed to supporting the community and help them better understand individuals that are diagnosed as having Down syndrome in Central Texas. The group first started in late 2010. It is the vision of the parents of a son born with Down syndrome that wanted to share their experiences with other families of special needs children.

    9915 Burgundy Lane,
    Waywood, TX 76712
    254-230-9782 (Alice)

    support@hotnds.org
    www.hotnds.org




    INTERNATIONAL MOSIAC DOWN SYNDRIOME ASSC.

    "IMDSA is designed to support any family or individual whose life has been affected by Mosaic Down syndrome by continuously pursuing research opportunities and increasing awareness in the medical, educational and public communities throughout the world."

    P.O. Box 354,
    Franklin, TX 77856

    imdsapresident@imdsa.com
    www.imdsa.org



    PANHANDLE DOWN SYNDROME GUILD

    The Panhandle Down syndrome Guild was founded in 2002 to promote a greater understanding of the medical and developmental aspects of Down syndrome. Along with the National Down syndrome Society (NDSS), which is the largest non-governmental supporter of research and advocacy, and the National Down syndrome Congress, PDSG strives to improve the lives of those persons in the Panhandle whose lives are affected by Down Syndrome. The Panhandle Down syndrome Guild increases public awareness about Down syndrome, to assist families in addressing the needs of children born with this genetic condition, and to sponsor community events. They work with the NDSS to dispel the myths associated with Down syndrome, while helping people with Down syndrome achieve their full potential in community life. PDSG develops and disseminated current information materials, as well as, plans activities to increase an acceptance of people with Down syndrome.

    P.O. Box 20783,
    Amarillo, TX 79114
    806-670-1568 (Vicki)
    806-382-2326 (Jeff)

    panhandledsg@yahoo.com
    www.panhandledsg.net




    PARENTS OF SPECIAL KIDS SUPPORT GROUP

    Steps 2 Strides Therapy Center,
    2300 West Morton Street,
    Denison, TX 75020
    903-462-4085

    marybeth.edgette@steps2strides.com
    stacy.gudgel@steps2strides.com




    RED RIVER VALLEY DOWN SYNDROME SOCIETY

    The mission of the Red River Valley Down Syndrome Society is to improve the lives of individuals with Down syndrome and other disabilities through support, education, awareness and advocacy.

    P.O. Box 6455,
    Paris, TX 75461
    877-273-4045
    903-783-1922

    info@rrvdss.org
    tphillips@rrvdss.org
    www.redriverdss.org



    RGV DISCOVER LIFE


    RGV Discover Life Inc. is created to inform and educate new and expecting parents about Down syndrome. We are a new organization in the Rio Grande Valley determined to help and inform parents and families about the special needs and potentials of babies with Down Syndrome.

    3100 South 2nd, #21,
    McAllen, TX 78503
    956-907-3851
    956-907-3851

    down.org@gmail.com
    http://rgvdiscoverlife.110mb.com




    THE ARC OF TEXAS

    Since our founding in 1950 by a group of parents of children with intellectual and developmental disabilities, The Arc at the local, state and national level has been instrumental in the creation of virtually every program, service, right, and benefit that is now available to more than half a million Texans with intellectual and developmental disabilities. Today, The Arc continues to advocate for including people with intellectual and developmental disabilities in all aspects of society.

    8001 Centre Park Drive
    Austin, Texas 78754
    Directions to office.


    http://www.thearcoftexas.org