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

Tuesday, May 15, 2012

Where to Start-Rhode Island



RHODE ISLAND EARLY INTERVENTION PROGRAM


RI's Early Intervention Program promotes the growth and development of infants and toddlers who have a developmental disability or delay in one or more areas. Developmental disabilities or delays can affect a child’s speech, physical ability, or social skills. Children referred to the Early Intervention Program receive a comprehensive developmental evaluation to determine if they are eligible.

One of the goals of Early Intervention is to provide support to families so their children can develop to their fullest potential. Services are provided in places where children usually play or take part in daily activities.


http://www.dhs.ri.gov/ChildrenwithSpecialNeeds/EarlyInterventionProgram/tabid/839/Default.aspx




Family Service of RI

This team of educators, health care professionals and social workers provides services in the home and community for babies and toddlers with, or at risk of, physical, social/emotional, or language delays.

P.O. Box 6688
Providence, RI 02940-6688
(401) 331-1350 or (401) 294-6138. 
HR@familyserviceri.org
http://www.familyserviceri.org/serv_early_intervention.asp




Meeting Street

Meeting Street Compassionately and innovatively empowers children and their families to thrive by fostering the development of the whole child.

1000 Eddy Street
Providence, RI 02905
Telephone: (401) 533-9100
Fax: (401) 533-9101
Email:
info@meetingstreet.org




EASTER SEALS

Easter Seals provides 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 communities.

Easter Seals Rhode Island
213 Robinson Street
Wakefield, RI 02879


http://ri.easterseals.com/site/PageServer?pagename=RIDR_contactus







MEDICAID WAIVER PROGRAM:

Rhode Island Global Consumer Choice Compact

According to information provided by the State, Rhode Island operates its entire Medicaid program under a single section 1115 demonstration. This demonstration includes the following programs: RIte Care, RIte Share, Extended Family Planning, Rhody Health Partners, Connect Care Choice, Home and Community-Based Services (HCBS), and RIte Smiles, all of which were previously operated under distinct demonstrations. All Medicaid-funded services on the continuum of care � from preventative care in the home and community to care in high-intensity hospital settings to long-term and end-of life-care � are organized, financed, and delivered through the Demonstration. Rhode Island uses the additional flexibility afforded by the waiver to redesign the State�s Medicaid program to provide cost-effective services that will ensure beneficiaries receive the appropriate services in the least restrictive and most appropriate setting. Under this demonstration, Rhode Island can submit three different types of change requests, each of which utilizes a different type of review process.

/Medicaid-CHIP-Program-Information/By-Topics/Waivers/1115/downloads/ri/ri-global-consumer-choice-compact-fs.pdf

/Medicaid-CHIP-Program-Information/By-State/rhode-island.html



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 RHODE ISLAND

Children's Neurodevelopment Center
Hasbro Children's Hospital
593 Eddy Street
Providence, RI
Phone: 401-444-4000




Hasbro Children's Hospital
593 Eddy Street
Providence, RI 02903
401-444-4000

http://www.hasbrochildrenshospital.org/






DOWN SYNDROME SOCIETY OF RHODE ISLAND


Parent support organization dedicated to promoting the rights, dignity and potential of all individuals with Down syndrome through advocacy, education, public awareness and support.


99 Bald Hill Road,
Cranston, RI 02920-2648
401-463-5751
www.dssri.org





DOWN SYNDROME SUPPORT SE MA AND RI

This group was created for the families of children with down syndrome in Southeastern MA and Rhode Island. This is a place to post questions, offer support, and post reminders for events.

http://health.groups.yahoo.com/group/Downsyndromesupport/



PAL

A statewide, non-profit organization that was built on the need to support and empower families and people with disabilities as they advocate for themselves. PAL’s mission statement reads, "PAL is committed to supporting families, individuals with disabilities and their network of friends in their effort to achieve their own personal dreams and to assume a social role of respect and dignity as a valued member of their community.

96 Rolf Street
Cranston, RI 02910
Doreen McConaghy, Executive Director
Phone: 401-785-2100
Email:
dmcconaghy@pal-ri.org




ADVOCATES IN ACTION

Rhode Island’s statewide self-advocacy organization for people with developmental disabilities.

96 Rolf Street
Cranston, RI 02920
Deb Kney, Coordinator
Phone: 401-785-2028
Email:
aina@aina-ri.org




THE ARC OF RHODE ISLAND

Advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with a network of members and affiliated chapters, the Arc seeks to improve systems of supports and services; connect families; inspire communities and influence public policy.

99 Bald Hill
Cranston, RI 02910
Mary Lou McCaffery, Executive Director
Phone: 401-463-9191
Email:
Rhodeislandarc@cs.com

Sunday, May 13, 2012

Where to Start-Utah



UTAH EARLY INTERVENTION


The program provides early identification and developmental services for families of infants and toddlers, ages birth to three.
Some of the services offered include:
  • A full assessment of a child's current health and development status.
  • Service coordination among providers, programs and agencies.
  • Strategies to build on family concerns, priorities, & resources (CPR).
  • Developmental services: occupational therapy, physical therapy, speech language therapy, etc.
These services are provided through the coordinated effort of parents, community agencies, and a variety of professionals. Places where services are provided include Baby Watch centers, home, and community settings such as child care.

Phone:
Toll-Free: 1-800-961-4226
Local: 1-801-584-8226

Mailing Address:
Baby Watch Early Intervention
PO Box 144720
Salt Lake City, UT 84114-4720


http://www.utahbabywatch.org/




EASTER SEALS

Easter Seals provides exceptional services, education, outreach, and advocacy so that people living with autism and other disabilities can live, learn, work and play in our communities.

http://www.easterseals.com/site/PageServer?pagename=ntl_job_training_scsep_ut



MEDICAID WAIVER PROGRAM:

UT Waiver for Technology Dependent, Medically Fragile Individuals (40183.R03.00)
Provides home health aide, skilled nursing respite care, extended private duty nursing, family directed support, FMS, family support services, in-home feeding therapy for medically fragile and technology dependent individuals ages 0 - 20

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/UT40183R0300.zip


UT Community Supports Waiver for Individuals w/ID and Other Related Conditions (0158.R05.00)
Provides day supports, homemaker, personal care, residential hab, respite care-intensive, supported employment, waiver support coordination, financial management services, behavior consultation I, behavior consultation II, behavior consultation III, chore, companion services, environmental adaptations, extended living supports, family and individual training and preparation services, family training and preparation services, living start-up costs, massage therapy, personal budget assistance, PERS, professional medication monitoring, respite care-routine group, respite care-routine, respite care-weekly, specialized medical equipment/supplies/assistive technology-monthly, specialized medical equipment/supplies/assistive technology-purchase, supported living, transportation (non-medical) for individuals w/autism, MR, DD ages 0 - no max age

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/UT0158R0500.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 UTAH

Down Syndrome ClincPrimary Children's Medical Center
100 North Mario Capecchi Drive
Salt Lake City, UT
Phone: 801-662-1600





SOUTHERN UTAH DOWN SYNDROME ASSOCIATION 

1055 West Red Cliffs Drive, Suite C, #526

Washington, UT 84780
435-632-7719
james.mcfadden@sudsa.org
www.sudsa.org




UTAH ANGELS FOUNDATION

United Angels Foundation is a non-profit, parent-to-parent support group that focuses on helping parents and families adjust to the birth of a child with special needs or disabilities. As our name indicates, we view these children as Angels; and, as we support the parents and families of all children that have special needs or disabilities, we are the United Angels Foundation.

2335 South State Street, Suite 150,
Provo, UT 84606
801-319-7664
info@unitedangelsfoundation.org
www.unitedangelsfoundation.org




UTAH DOWN SYNDROME FOUNDATION

A non-profit organization established in 1977, the UTAH DOWN SYNDROME FOUNDATION provides outreach, training, support, education, information, and activities for individuals with Down syndrome, their parents and families, and the community. With chapters throughout the state, this volunteer organization has grown to become Utah’s largest support provider for the Down syndrome community.
The UDSF strives to bring families together to share experiences, challenges, goals, and dreams and to educate parents and society in understanding and appreciating the needs of individuals with Down syndrome. As parents gain knowledge, they are empowered to become better advocates for their children, thus providing them with increased opportunities to reach their highest potential.

P.O. Box 675,
Salt Lake City, UT 84110
877-499-8373
801-446-1994
info@udsf.org
www.udsf.org



THE ARC OF UTAH

(801) 364-5060
155 S 300 W Ste 201
Salt Lake City,UT84101

Where to Start-Wyoming



WYOMING EARLY INTERVENTION PROGRAM

The EIEP at the Behavioral Health Division - DD Programs provides assistance and oversight to the regional child development centers that serve young children, from birth through 5 years of age, with disabilities and their families across Wyoming.

Telephone: 307-777-7115
Fax: 307-777-6047
http://www.health.wyo.gov/ddd/earlychildhood/index.html





EASTER SEALS

Easter Seals-Goodwill Northern Rocky Mountain provides services for children and adults with disabilities and other special needs, and support to their families.

http://esgw-nrm.easterseals.com/site/PageServer?pagename=NRMM_Wyoming_clientstories








MEDICAID WAIVER PROGRAM:


WY Children w/DD (0253.R04.00)
Provides case management, community integrated employment, homemaker, personal care, residential hab, respite, special family habilitation home, agency with choice, independent support broker, child hab services, companion services, dietician services, environmental mods, individually-directed goods and services, residential hab training, skilled nursing, specialized equipment, supported living, unpaid caregiver training and education for individuals w/MR/DD ages 0 - 20

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/WY0253R0400.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 WYOMING


Wyoming Department of Health
Genetics Clinic and Specialty Clinic Services
Program Contact: Carleigh Soule
Phone: (307) 777-6297





WYOMING DOWN SYNDROME ASSOCIATION 

The Wyoming Down Syndrome Association was established by Ark Regional Services in Laramie, Wyoming to address a void that existed in adequate support available for families of individuals with Down syndrome in Wyoming. Using the resources provided by the annual Wyoming Buddy Walk® and other grants and donations, WyDSA provides education, information, networking opportunities, and support for individuals with Down syndrome and their families.
Division of Ark Regional Services,
1150 North 3rd Street,
Laramie, WY 82072
307-742-6641
jashley@arkregionalservices.org
bsell@arkregionalservices.org
www.wydsa.org




THE ARC OF WYOMING

 "The Arc of Livingston-Wyoming empowers people of all ages to experience the joys and challenges of life with a growing sense of personal dignity and independence."

The Arc of Livingston-Wyoming offers children and adults with disabilities a wide range of services to meet their day-to-day needs with an emphasis on helping them reach their maximum potential.




http://www.lwarc.org/



Where to Start-Wisconsin




WISCONSIN EARLY INTERVENTION PROGRAM


The first three years are the most important building blocks of your child’s future. The Birth to 3 Program is a federally-mandated program (Part C of the Individuals with Disabilities Education Act—IDEA) to support families of children with delays or disabilities under the age of three.        

Department of Health Services
1 West Wilson Street
Madison, WI 53703

General Phone Number: 608-266-1865,
TTY Phone Number: 888-701-1251


http://www.dhs.wisconsin.gov/children/birthto3/





EASTER SEALS


4201 Monona Dr
Monona, WI 53716
Phone: 608-257-7780
Toll free at 1-877-208-5109
E-mail:
dcenter@eastersealswisconsin.com
http://www.eastersealswisconsin.com/










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 WISCONSIN


Waisman Center
Developmental Disabilities Clinic
1500 Highland
Madison, WI
Phone: 608-263-5815


Down Syndrome Clinic of Wisconsin
Children's Hospital of Wisconsin
9000 W. Wisconsin Avenue, MS 786E
Milwaukee, WI
Phone: 414-266-6259
e-mail
dscw@chw.org

Gundersen Lutheran Clinic
1910 South Avenue
La Crosse, WI
Phone: 800-362-9567 or 608-782-7300







DOWN SYNDROME ASSOCIATION OF WISCONSIN

The vision of the Down Syndrome Association of Wisconsin (DSAW) is that we all understand the value of those with Down syndrome in our lives and our communities. We continually strive toward full acceptance, full access, full life and full potential.

3211 South Lake Drive, Suite 113,
St. Francis, WI 53235
866-327-3729
414-327-3729
info@dsaw.org
today@gklaw.com
www.dsaw.org





GETTIN' DOWN CENTRAL WISCONSIN

Wisconsin Rapids, WI 54494
888-641-4135
info@gettindowncentralwi.org
www.gettindowncentralwi.org




MADISON AREA DOWN SYNDROME SOCIETY

Our mission is to provide support to families and individuals with Down syndrome while advancing awareness, respect and opportunity.

P.O. Box 44796,
Madison, WI 53744
608-692-7653
info@madss.org
sterling@madss.org
www.madss.org




WISCONSIN UPSIDE DOWN FOUNDATION

N41W 29213 Prairie Wind Circle South,
Pewaukee, WI 53072
262-443-8690
wiupsidedown@gmail.com
robbin@wiupsidedown.org
www.wiupsidedown.org




THE ARC OF WISCONSIN

2800 Royal Ave., Suite 209
Madison, WI 53713
(608) 222-8907 Phone
(877) 272-8400 Toll Free
(608) 222-8908 Fax
E-mail:
arcw@att.net
Web: http://www.arc-wisconsin.org