Sunday, April 29, 2012

Where to Start-Mississippi

MISSISSIPPI EARLY INTERVENTION PROGRAM


First Steps is a program that matches the unique needs of infants and toddlers who have developmental delays with professional resources within the community.

If you have a child up to three years old, First Steps will provide educational material and other resources to help you recognize developmental problems as early as possible.

570 East Woodrow Wilson Drive
Jackson, MS 39216

601-576-7400 (8am-5pm)
http://msdh.ms.gov/msdhsite/_static/41,0,74.html
 
 
 
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.


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 CLINIC

The Waisman Center provides comprehensive clinical care and support for children with disabilities and their families. The Waisman Center Down Syndrome Clinic is a partnership with UW Health and the American Family Children's Hospital. A multidisciplinary team of professionals work together to provide clinical care of children up to 18 years of age with a diagnosis of Down syndrome.
Children and their families are seen for initial and follow-up visits to address concerns related to Down syndrome in the areas of: feeding, growth, development, communication, behavior, hearing, therapy and support services. Genetic counseling is also provided in the clinic. Individualized care is provided according to the needs of the child identified in collaboration with their parent or guardian. The guidelines will be followed from the American Academy of Pediatrics Standards in the Care of Children with Down Syndrome.1
Waisman Center Clinics: 608-263-3301
Mary Rasmussen, coordinator, Biochemical Genetics Clinic, 608-263-5993
Greg Rice, MD, Biochemical Geneticist, 608-263-5993
EZ Referrals encouraged




MISSISSIPPI CHILDREN'S HOSPITAL
http://www.umhc.com/Health_Care_Services/ChildrenDefault.aspx?WT.srch=1



CENTRAL MISSISSIPPI DOWN SYNDROME SOCIETY



The Central Mississippi Down Syndrome Society (CMDSS) was established in July 2003. Its first project was the 1st Annual Central Mississippi Buddy Walk held in October 2003. More than 500 people turned out to show their support of individuals with Down syndrome. It was an overwhelming success and showed the tremendous need for an advocacy organization for people with Down syndrome and their families. A very active group of parents have united together to share ideas, offer emotional support, provide educational information, and to actively promote a positive image of people with Down syndrome in our community.

P.O. Box 2189, Brandon, MS 39043
Telephone: 601-397-3696
Email: info@cmdss.org
Website: www.cmdss.org




GULF COAST DOWN SYNDROME SOCIETY


The purpose of the Gulf Coast Down Syndrome Society is to build a supportive network for families and individuals with Down syndrome to share information, strength and hope. It is our mission to ensure that all people with Down syndrome have the opportunity to achieve their full potential in community life. At the same time, it is our goal to provide children and adults with Down syndrome peer groups in which they can form lifelong friendships. Parents, family members, individuals with Down syndrome, and anyone else interested in learning more are welcome to attend any of the events sponsored by GCDSS.    

P.O. Box 654, Gautier, MS 39553
Telephone: 228-623-3331
Email: gcdss@cableone.net
Email 2: info@gcdss.org
Website: http://www.gcdss.org



NORTHEAST MISSISSIPPI DOWN SYNDROME SOCIETY

NEMDSS was founded in April, 2007 by Scott & Michelle Knight of Saltillo after the birth of their 3rd son, Peyton. Realizing the need for support services & resources for new families of babies born with Down syndrome, the Knight’s joined forces with Michael & Renea Simmerman, who welcomed their 2nd son Trevor into the world 6 mos. later. Together, they formed what is today named the Northeast Mississippi Down syndrome Society, a nonprofit support organization that serves the N.E. Mississippi region.

193 Westwood Circle, Saltillo, MS 38866
Telephone: 662-871-2387
Email: nemdss@bellsouth.net
Website: www.nemdss.org




THE ARC OF MISSISSIPPI
7 Lakeland Circle #600
Jackson, MS 39216
Phone: (601)982-1180
Toll free: 800-717-1180
Fax: (601) 982-5792
www.arcms.org

Where to Start-Missouri


MISSOURI EARLY INTERVENTION PROGRAM

First Steps offers coordinated services and assistance to young children with special needs and their families. First Steps is designed for children, birth to age 3, who have delayed development or diagnosed conditions that are associated with developmental disabilities.
http://www.eikids.com/mo/matrix/

http://dese.mo.gov/se/fs/ParentInfo.html


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.

Easter Seals Missouri
13975 Manchester Road
Manchester, MO 63011
Phone: 800-664-5025
Phone 2: 636-227-6030

http://www.easterseals.com/site/PageServer



MEDICAID WAIVER PROGRAM:
MO Children w/DD (MOCDD) (40185.R03.00)
Provides day hab, in home respite, personal assistant, behavior therapy, community specialist, crisis intervention, environmental accessibility adaptations, out of home respite, specialized medical equipment & supplies, support broker, & transportation for children w/MR/DD 0-17 yrs
https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/MO40185R0300.zip

The Missouri Department of Mental Health's Division of Developmental Disabilities (Division of DD) administers five Medicaid Home and Community Based (HCB) Waiver programs for individuals with mental retardation or other developmental disabilities. The five waivers are the Comprehensive Waiver; Missouri Children with Developmental Disabilities Waiver (MOCDD or Sarah Jian Lopez Waiver; Community Support Waiver; Partnership for Hope; and Autism Waiver.


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.


MISSOURI GENETICS

1101 Hospital Drive. For more information please call 573-884-6735 and to schedule an appointment please call 573-882-6921.

Geneticists:
Stephen Braddock, M.D.
Judith Miles, M.D., Ph.D

Genetic Counselors:
Janda Buchholz, M.S.
Jennifer Kussmann, M.S
Dawn Peck, M.S.



ALBERT PUJOLS WELLNESS CENTER FOR ADULTS WITH DOWN SYNDROME

121 St. Luke's Center Drive, Chesterfield, MO 63017
314-576-2300
314-576-2300
Email: ads.wellnesscenter@stlukes-stl.com
Website: www.stlukes-stl.com



DS ASSOCIATION OF GREATER ST. LOUIS

The mission of the Down Syndrome Association of Greater St. Louis is to benefit the lives of people with Down syndrome and their families through individual and family support, education, public awareness and advocacy.
8420 Delmar Boulevard, Suite 200, St. Louis, MO 63124
314-961-2504
Email: info@dsagsl.org
Email 2: execdirector@dsagsl.org
Website: www.dsagsl.org




DOWN SYNDROME GROUP OF THE OZARKS

The Down Syndrome Group of the Ozarks mission is to build a network of support for individuals with Down syndrome and those who love and serve them in Southwest Missouri.

This will be achieved by providing support and education on early intervention services, promoting inclusive education, highlighting appropriate medical services, encouraging quality employment opportunities and advocating for community awareness and acceptance.



P.O. Box 1598, Springfield, MO 65801
417-885-9905
888-655-5173
Email: info@ozarksdsg.org
Website: www.ozarksdsg.org




HEARTLAND DOWN SYNDROME ASSOCIATION

Cape Girardeau, MO 63701
Email: heartlanddsa@msn.com




THE ARC OF MISSOURI

The Arc of the United States Missouri Chapter is a grassroots organization working to support and empower persons with intellectual and developmental disabilities and their families through advocacy and education, expanding individual choices and promoting community inclusion.

7400-C N. Oak Trfy
Gladstone, Missouri 64118-1747
(816) 436-3009

terryblanks@kc.rr.com


DOWN SYNDROME GUILD OF GREATER KANSAS CITY

The Down Syndrome Guild of Greater Kansas City is a 501 c 3 nonprofit organization whose mission is to provide support and resources for individuals with Down syndrome and their families. DSG seeks to provide the entire community with information and education to broaden awareness and foster positive attitudes regarding people with Down syndrome.

http://www.kcdsg.org/



 

Where to Start-Minnesota

MINNESOTA EARLY INTERVENTION PROGRAM

While all young children grow and change at their own rate, some children experience delays in their development. Special health conditions may affect children's development, too. Accessing early intervention services as early as possible will ensure the best developmental outcomes for these children.

http://www.health.state.mn.us/divs/fh/mcshn/ecip.htm

EASTER SEALS:
The mission of Goodwill/Easter Seals Minnesota is to assist people with barriers to education, employment and independence in achieving their goals.

Goodwill/Easter Seals Minnesota
553 Fairview Ave. N.
St Paul, MN 55104

Phone: 651-379-5800
Fax: 651-379-5803


MEDICAID WAIVER PROGRAM:

MN Community Alternatives for Disabled Individuals (0166.R05.00)
Provides adult day care, caregiver living expenses, case management, homemaker, prevocational, respite, supported exployment, extended home health care, extended personal care assistance, extended State plan private duty nursing, 24-hr emergency assistance, adult companion services, adult day care bath, adult foster care, behavioral programming, child foster care, chore services, consumer-directed community supports-personal assistance, consumer-directed community supports-self-direction support activities, consumer-directed community supports-environmental mods and provisions, consumer-directed community supports-treatment and training, customized living-24 hr, customized living, environmental accessibility adaptations, family training and counseling, home delivered meals, housing access coordination, independent living skills training services, managed care premiums, residential care, specialized equipment and supplies, transitional services, transportation for disabled other and physically disabled individuals ages 0 -64

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/MN0166R0500.zip

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

Children’s genetics clinic is one of the largest in the region, providing 2,000 patient visits per year to children and teens from Minnesota, Wisconsin, North and South Dakota, Michigan, and Nebraska. We care for children with genetic conditions, adults whose conditions originated in childhood, and families with a history of pediatric genetic issues. Our program’s size and dedicated administrative staff allow us to see most new patients within six weeks.

Children’s is the only genetics clinic in Minnesota with a focus on clinical care of pediatric patients and conditions. Children’s pediatric, clinical focus means your child’s care includes:

http://www.childrensmn.org/Services/genetics/

DOWN SYNDROME ASSOCIATION OF MINNESOTA

Welcome to the Down Syndrome Association of Minnesota. You will find good company here. The Association is composed of some 3,000 members; more than 900 people with Down syndrome, their families and friends, plus health-care, education and developmental professionals. We are the only organization in our region devoted exclusively to the needs of people with Down syndrome and their families.
656 Transfer Road
St. Paul, MN 55114
(651) 603-0720
(800) 511-3696
dsamn@dsamn.org
http://www.dsamn.org/



ANGELS UP NORTH DOWN SYNDROME GROUP

Mission is to promote awareness and acceptance in the community for all individuals with Down syndrome (DS). We hope to have individuals of all ages and backgrounds with Down syndrome supported and accepted in their communities.
http://angelsupnorth.weebly.com/what-is-down-syndrome.html

 
THE ARC OF MINNESOTA
Our Mission: Promoting and protecting the human rights of people with intellectual and developmental disabilities, and actively supporting their full inclusion and participation in the community throughout their lifetimes.
800 Transfer Road, Suite 7A, St. Paul, MN 55114

Where to Start-Michigan


MICHIGAN EARLY INTERVENTION PROGRAM

Children's Special Health Care Services (CSHCS) is a program within the Michigan Department of Community Health. It is for children with special health care needs and their families. The program can help with referral and financial assistance for specialty services and support for primary caretakers. For more information call the CSHCS Family Phone Line at 1-800-359-3722 or visit their webpage. (CSHCS)

http://www.michigan.gov/mdch/0,4612,7-132-2942_4911_21429-59375--,00.html


EASTER SEALS:

Easter Seals Michigan serves and supports people with disabilities or special needs and their families so they can successfully live, learn, work and play in their communities.

(248) 475-6400 (voice)
800-75-SEALS (toll-free)

2399 E. Walton Blvd.
Auburn Hills, MI 48326

http://mi.easterseals.com

 
MEDICAID WAIVER PROGRAM:

MI Waiver for Children w/SED (0438.R01.00)
Provides respite, child therapeutic foster care, community living supports, community transition, family home care training, family support and training, therapeutic activities, therapeutic overnight camping, wraparound for individuals w/mental illness SED ages 0-19

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/MI0438R0100.zip

MI Children's Waiver Program (4119.R05.00)
Provides respite, enhanced transportation, fiscal intermediary, community living supports, environmental accessibility adaptation s and specialized medical equipment and supplies, home care training-family, home care training-n on-family, specialty service for individuals w/autism, MR, DD ages 0-17

https://www.cms.gov/MedicaidStWaivProgDemoPGI/downloads/MI0438R0100.zip

http://www.medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Waivers/Waivers.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 CENTERS OF MICHIGAN

Phone: (866) 852-1247 (toll-free)
(517) 335-8887www.MIGeneticsConnection.org


CAPITAL AREA DOWN SYNDROME ASSOCIATION

CADSA was created by parents of children with Down syndrome as a support system. Our organization offers emotional support to people with Ds and their families, and provides assistance and guidance in several areas.
Phone: (517) 575-4308
Address: P.O. Box 25112
Lansing, MI 48909
DOWN SYNDROME ASSOCIATION OF WEST MICHIGAN
The mission of the Down Syndrome Association is to provide support, resources and advocacy with the aim of increasing awareness and opportunities for individuals with Down syndrome, their families and caregivers.
Contact: Charlene Hill, President
Phone: (616) 957-4934
Fax: (616) 974-9612
Address: PO Box 888164
Grand Rapids, MI 49588
DOWN SYNDROME GUILD OF SOUTHEAST MI
The Down Syndrome Guild of Southeast Michigan (DSG) is a non-profit parent led, community based support network designed to strengthen, empower and inform families and communities about people with Down syndrome.
FAMILIES EXPLORING DOWN SYNDROME
Families Exploring Down Syndrome (FEDS) wants you to see how people with Down syndrome and their families "shine on" and how we can all help make this a better world, not only for them, but for everyone. Take a moment to explore our site. It's full of Down syndrome-related information, resources, and of course, stars.
Address: P.O. Box 1191
Sterling Heights, MI 48311
CENTRAL MICHIGAN DOWN SYNDROME SOCIETY
2020 South Mission, #152, Mount Pleasant, MI 48858
Telephone: 989-621-5697
Email: elizabethsmom@charter.net
DOWN SYNDROME SUPPORT TEAM
The Down Syndrome Support Team of Washtenaw County, MI is a group of parents with their children that meet monthly, share experiences, ideas, work together to offer our children great opportunities, build friendships, and so much more.

If you have a child with Down Syndrome and would like to talk to someone or come and meet other parents and children in your area, please contact us. We would love to hear from you.
Mailing Address: 9227 Fieldstone Lane, Saline, MI 48176
Telephone: 734-944-1595
Email: eluther@downsyndromesupportteam.com
Website: www.downsyndromesupportteam.com
F.R.I.E.N.D.S.
23875 Rockingham Street, Southfield, MI 48033
Telephone: 248-354-1427
Email: friends021@netzero.com
ST. CLAIR COUNTRY DS SUPPORT GROUP

2509 Woodstock Drive, Port Huron, MI 48060
Telephone: 810-367-2045
Email: kellydinardo@comcast.net


SPECIAL PARENTS INITIATIVE FOR DS EDUCATION AND RESOURCES (S.P.I.D.E.R.)
 
SPIDER is a group of concerned family and friends that have been brought together by one common denominator, all of us are blessed with having a child with Down Syndrome in our lives. Most of us were not prepared for the sudden and often drastic changes in our lives that occur, when a "Special Needs Child," comes into our life. One universal concern has been the lack of adequate information and services that are immediately available to assist our families. There are many questions in the first few hours and weeks of our child's life that need to be addressed, such as medical, physiological and emotional. We are here to answer these questions and to make available any resources to our families. This will insure that our children have the greatest advantages from the beginning and throughout their lives.
http://www.lapeerspider.org/

THE ARC OF MICHIGAN

The mission of The Arc Michigan is to ensure that people with Developmental Disabilities are valued in order that they and their families can participate fully in and contribute to their community.

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1325 South Washington Ave.
Lansing, Michigan 48910-1652
Phone: (800) 292-7851 or (517) 487-5426
Fax: (517) 487-0303

Where to Start-Maine



MAINE EARLY INTERVENTION PROGRAM


The Child Development Services (CDS) system is an Intermediate Educational Unit that provides both Early Intervention (birth - two years) and Free Appropriate Public Education (FAPE for ages three - five years) under the supervision of the Maine Department of Education.

State Intermediate Educational Unit
146 State House Station
Augusta, ME 04333

(207) 624-6660 Voice
(207) 624-6661 Fax


http://www.maine.gov/education/speced/cds/index.html

The Handicapped Infants and Toddlers Program was set up in 1986 by Public Law 99-457, Part H. It offers federal money to any state that will establish a system of early intervention services to children with special needs, age 0-2, and their families. The intent of early intervention is to identify and treat certain conditions or needs early, and thereby lessen or prevent the effects.
Part H regulations set out specific guidelines a state must follow in order to receive the federal funds. Each program must be designed to include:


1. A focus on the family
This represents a significant shift in philosophy from past service delivery systems. Part H recognizes that every family has resources and skills of its own and considers these in the process of early intervention. A family is offered support and education; its strengths and needs are used to determine, write, and implement the Individualized Family Service Plan, the IFSP. It is the written document of goals and objectives spelling out the program of services and therapies.


2. A multi-disciplinary assessment
The IFSP must be based on results from a number of formal tests, observations, and interviews gathered by family and professionals from different disciplines, i.e. medical doctors, speech pathologists, psychologists, etc. The child's present level of performance (what he/she can do, as well as weaknesses) is considered.


3. Comprehensive services provided by qualified personnel
The state must have available a full range of services, including medical and social work and parent education. Related services are those that support the direct services; they include, but are not limited to: transportation, physical and occupational therapies, counseling, speech and language, recreation, and audiology.


4. Interagency cooperation, with public monitoring
Different state and private agencies may share responsibility for the funding and providing of services, but they will be coordinated by one state department.



5. Procedural safeguards
Parents and their children will have certain rights regarding their involvement with the early intervention system. Although each state may add to what the federal law requires, these three parental rights must be included:
-the right to give or deny consent at any step in the process;
-the right to confidentiality of all information regarding their family;
-the right to challenge and appeal any decisions made during the process.


6. FAPE (Free and Appropriate Public Education)
The sum of therapies and services designed for each family and child constitute the free and appropriate public education guaranteed by Part H to every child with special needs who is under five years of age.* In order to be considered "appropriate", the program must conform to all of the above (#1-#5) and place the child in the "least restrictive environment"(LRE). This is the setting where the child can best benefit from the services and, at the same time, be included with children without disabilities as much as possible.


*Early intervention services for children under three in Maine include evaluation, the Individualized Family Service Plan, and case management. For children three to five, FAPE services include evaluation, the IFSP, case management, and any needed therapy.


GETTING STARTED


Early intervention services are those offered to children with special needs from birth through age two. If a condition or need that may affect a child's development is found and treated early, the effects may be lessened or prevented. When a child is identified with a disability or is deemed to be at risk of a developmental delay, a program of therapies/strategies is then designed. The federal law called the Individuals with Disabilities Education Act, or IDEA, covers special education for children of all ages and guarantees rights to children with special needs who are under five.

Each state writes its own policies to carry out the federal law. Maine has chosen to directly fund only the special education services for 3-5 year olds, but help is available to children from birth through two, also.

If I think my child has a disability, what should I do first?
If your child was not identified at birth with a disability, and a physician or nurse is not aware of your concern, you could start by discussing it with one of them. Or you can call Child Development Services, the agency that is in charge of Childfind in Maine.


What should I say to them?
Tell them you think your child may need early intervention services and ask how to go about getting an assessment done. Start and keep a file of names and phone numbers of people you talk to, and write down all the information they give you. If there's anything you don't understand, ask for explanations.


What is an assessment? Who will do it? Will I have to pay?
Evaluations and assessments are ways of gathering information about your child to decide if he or she needs early intervention services. A team of professionals will conduct the evaluation by talking with you, looking at medical records, and examining and observing your child. Then everyone will get together to discuss the results. You might be asked to use your insurance or Medicaid to pay for the evaluation, but you are not required to do that.


What makes a child eligible for services?
For children under two, eligibility is defined in one of the following ways:
* Certain specific conditions, like Down Syndrome and spina bifida, will mean a child qualifies for early intervention services.
* Prematurity or complications at birth may indicate risk of developmental delay and may qualify a child for services.
* If the assessment/evaluation results show a delay in one or more area of development, a child may qualify.


Who will pay for the services if my child is found eligible?
Your case manager, assigned to you by the state, will help you find funding for the early intervention services decided on for your child. Your private insurance, Children's Services, Medicaid, and Social Security Income are some of the possible sources.


Who can I call if I have more questions?
Your case manager will help you find answers to most questions you have, but some other sources of information are:

Maine Parent Federation - 1-800-870-7746 or (207)623-2144
Children's Services - 287-4250
Coordinated Care Services - 1-800-698-3624 ext. 7-5139 or 287-5139

What should I do if they find my child ineligible, but I still have concerns?
The first step will be to write a request for a review. There may be time limits, so check with your case manager for more details. If you disagree with the result of the review, you may ask for an appeals hearing. In any letter you write to file a complaint, always include the reason for the complaint, all facts about it, and the results of any previous complaints you've made.


For more information on this or other topics related to the needs of children with disabilities, call or write Maine Parent Federation, P.O. Box 2067, Augusta, Maine 04338, 1-800-870-7746 (In-State Only), 207-623-2144, or e-mail MPF at parentconnect@mpf.org.

This fact sheet is paid for through grants from the Federal Department of Education and the State of Maine Department of Education, utilizing funds under the Individuals with Disabilities Education Act.

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.

You can also reach Easter Seals at:
207-828-0754
Or, via regular mail at:
Easter Seals Maine125 Presumpscot Street
Portland, ME 04103
207-828-0754

http://maine.easterseals.com/site/PageServer?pagename=MEDR_homepage



MEDICAID WAIVER PROGRAM:

The Office of Child & Family Services, Children’s Behavioral Health Division, is very pleased to announce that CMS, the federal Medicaid authority, has officially approved our request to develop a Home & Community-Based Waiver Program for children with Intellectual Disabilities and/or Pervasive Developmental Disorders.

http://www.maine.gov/dhhs/ocfs/cbhs/waiver/index.shtml


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.

MAINE GENETICS INFORMATION

Ellie Mulcahy, R.N.C.Director, Maine Genetics Program
Maine Department of Health and Human Services
286 Water St.
Augusta, ME 04333
(207)287-4623
Eleanor.a.mulcahy@maine.gov

BARBARA BUSH CHILDREN'S HOSPITAL

 
MAINE DOWN SYNDROME NETWORK
Began in 2001 as a few families meeting in each other’s living rooms.  They have grown over the years to include families, self-advocates, educators and professionals.  They sponsor monthly social gatherings, playgroups, guest speakers, and workshops.  They offer members a chance to reach out to each other at any time through an online forum. Every year we donate books to every public library in the state. We host annual Buddy Walks in Portland and Augusta that draw over 500 people. We provide information packets, and flowers to families with new babies. And they are proud to say that they still meet monthly in each other’s living rooms. Supporting each other is at the heart of their group.
P.O.Box 705
Windham, ME 04062
phone/fax (866) 571-2223
 
 

Saturday, April 28, 2012

Where to Start-Maryland

MARYLAND EARLY INTERVENTION PROGRAM


The ECIE Branch includes the Maryland Infants and Toddlers Program and Preschool Special Education Services for children with disabilities age birth through five and their families. On behalf of the Division of Special Education/Early Intervention Services, we invite parents, service providers, administrators, advocates and other stakeholders to join us in sharing resources and information to support young children with disabilities and their families.

http://www.marylandpublicschools.org/MSDE/divisions/earlyinterv/infant_toddlers


EARLY CHILDHOOD GATEWAY

This resource is developed and maintained through a partnership between the Maryland State Department of Education, Division of Special Education/Early Intervention Services and the Johns Hopkins University Center for Technology in Education, and supports the work of the Maryland Infants and Toddlers Program/Preschool Services Branch.
Through the Gateway you are able to access sections with resources dedicated to improving services for families with young children with disabilities.

http://www.mdecgateway.org/home


FAMILY NETWORKS

Maryland's comprehensive online resource for disability-related information and supports. Search for resources, information, and ideas on issues ranging from early intervention and education to employment and aging services.

http://www.family-networks.org/Home.shtml
EASTER SEALS:
Easter Seals Delaware and Maryland's Eastern Shore 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.


SALISBURY, MD
Get Directions1336 Belmont Ave, Suite 502
Salisbury, MD 21804-4500
410-546-2894 phone
410-546-4913 fax
http://de.easterseals.com/site/PageServer?pagename=DMDR_homepage



MEDICAID WAIVER PROGRAM:

Autism Waiver
240-777-1216 (V)
240-777-1217 (TTY)
1-866-417-3480 (Registry)
The Maryland State Department of Education administers the Autism Waiver, targeted to children ages 1 through the end of the semester that the child turns 21. As a part of determining eligibility, a child must be diagnosed with Autism Spectrum Disorder, meet an Intermediate Care Facility for the Mental Retarded Level of Care, not be enrolled in any other waiver, and have an Individualized Educational Program (IEP) or Individualized Family Service Plan (IFSP) and receive at least 15 hours of special education and related services per week. The services provided under the Autism Waiver are respite care, family training, environmental accessibility adaptations, supported employment, day habilitation, residential habilitation, and targeted case management.


Community Pathways / New Directions Waiver
410-767-5636 (V)
301-362-5100 (V)
Community Pathways continues to cover services such as residential, community supported living arrangement (CSLA), and day and supported employment services. Additionally, it covers Family and Individuals Support Services for eligible individuals. New Directions is for people living in their own homes or with their families. It will be available to people in all parts of the State. Everyone in New Directions will have an Individual Budget. With assistance from a Fiscal Management Service (FMS) and a person called a Support Broker, the individual will manage their budget, hire and supervise their own staff and make decisions about how their services are provided. The FMS will pay bills, take care of tax paperwork, and provide monthly budget statements. The Support Broker will be someone the person trusts to help them navigate the system, help them with staff and act as an advocate. The Maryland Medicaid Home and Community-Based Service (HCBS) Waiver is a way for the Developmental Disabilities Administration (DDA) to receive matching federal dollars for funds spent by the DDA on community services provided to Medicaid-eligible individuals without that person having to enter an institution. The waiver for individuals with developmental disabilities supports the development of home and community-based alternatives to placing individuals in institutions operated by the DDA or in out-of-state institutions. Additionally, it makes home and community-based services available to individuals who would otherwise qualify for Medicaid only if they were in an institutional setting.


Living at Home Waiver for Persons with a Physical Disability
E-mail:
brosencrantz@coordinatingcenter.org
410-767-7639 (V)
1-800-332-6327 (Toll Free)
1-800-925-4434 (TTY)
The Maryland Department of Health and Mental Hygiene administers the Maryland Community Choice or Living at Home Waiver that provides services for those eligible individuals that meet a nursing home level of care and are between the ages of 21 and 65 years of age. This waiver is designed to provide consumer-directed personal assistance services for adults with physical disabilities in their own home. Waiver services include attendant care, administrative case management, family and/or consumer training, skilled nursing supervision, personal emergency response systems, environmental accessibility adaptations, and occupational and speech/language therapies. Persons receiving Medicaid and living for at least 30 days in a long term care facility are automatically eligible for the Living at Home Waiver. If the person receives both Medicaid and Medicare the wait is at least 60 days before being able to apply for waiver services.


Model Waiver for Disabled Children
E-mail: bbernstein@coordinatingcenter.org
410-987-1048 (V)
301-621-7830 (V)
This waiver targets medically fragile individuals including technology dependent individuals who, before the age of 22, would otherwise be hospitalized and are certified as needing hospital or nursing home level of care. Through the waiver, services are provided to enable medically fragile children to live and be cared for at home rather than in a hospital. Model Waiver services include case management, private duty nursing, shift home health aide assistance, physician participation in the Plan of Care development and durable medical equipment and supplies. Individuals that would like to apply for Model Waiver Services must contact the Coordinating Center for Home and Community Care, Inc., a case management organization.
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 TESTING & COUNSELING AT UNIVERSITY OF MARYLAND CHILDREN'S HOSPITAL
The Division of Human Genetics provides comprehensive inpatient, outpatient and laboratory genetic services to patients of all ages, including a network of state-wide outreach clinics.
Services consist of:
  • Evaluation, counseling and ongoing care for patients with genetic diseases, birth defects and multiple malformation syndromes
  • State-of-the-art cytogenetic, biochemical and DNA testing
University of Maryland Medical Center
22. S. Greene St.
Baltimore, MD 21201-1595
800-492-5538
http://www.umm.edu/pediatrics/gen_phys.htm
 
DOWN SYNDROME NETWORK OF MONTGOMERY COUNTY
The mission of the Down Syndrome Network of Montgomery County is to empower and support individuals with Down syndrome, their families and the community through education, information, public awareness and advocacy.
 
PO Box 10416
Rockville, Maryland 20849
(301) 979-1112
info@dsnmc.org
www.dsnmc.org
http://www.dsnmc.org/
 
F.R.I.E.N.D.S.
F.R.I.E.N.D.S., or Family Resource, Information & Education Network for Down Syndrome is a non-profit group of parents re-formed in 1999 in Frederick County, Maryland to:
  • Be a support and resource group for expectant parents, new parents and extended families of babies born with Down Syndrome;
  • Provide age-appropriate activities for our children and their friends;
  • Advocate for community awareness and acceptance;
  • Have quarterly meetings with professional speakers experienced in issues relative to Down Syndrome;
  • Meet informally to share the joys and challenges of parenting.
 
CHESAPEAKE DOWN SYNDROME PARENT GROUP
The purpose of the Chesapeake Down Syndrome Parent Group, Inc. is to serve families of and persons with Down syndrome by providing information and support.
P.O. Box 20127 Baltimore, MD 21284-0127
Telephone: 410.321.5434 - E-Mail: info@cdspg.org
 
PARENTS OF CHILDREN WITH DOWN SYNDROME (PODS) OF PRINCE GEORGE'S COUNTY
PODS Phone: 301-925-7050, Ext. 653
PODS Email: parentcoordinator@podsofpgc.org

ANGELS FOREVER UP

Angels Forever Up! represents a group of parents and professionals in
Southern Maryland who share a vision for persons with Down syndrome.

PO Box 868 | Waldorf Md 20604
(240) 412-1922


Charles County

Infants and toddlers program
June Castro. (301) 609-6808
Calvert County

Infants and toddlers program.
Mon-Fri 8.00am - 3.30pm (410) 414-7034
St. Marys County

Infants and toddlers program
(301) 475-4393


http://angelsforeverup.org/index.shtml

THE ARC OF MARYLAND

The Arc of Maryland is changing minds and changing lives for individuals and families living with developmental disability. We welcome you to read our stories, learn about our programs, find a chapter near you and get involved in making Maryland a better place to live for all.

Local Chapters
The Arc of Maryland
49 Old Solomons Island Road, Ste 205
Annapolis, Maryland 21401
410-571-9320 (Annapolis)
410-974-6139 (Baltimore)
410-974-6021 Fax
www.thearcmd.org

The Arc of Central Chesapeake Region
931 Spa Road
Annapolis, MD 21401
410-269-1883
443-557-0194 (Glen Burnie Office)
410-269-0091 Fax
Website: www.thearcccr.org
The Arc of Baltimore
7215 York Road
Baltimore, MD 21212
410-296-2272
410-296-2394 Fax
Website: www.arcofbaltimore.org
The Arc of Carroll County
180 Kriders Church Road
Westminster, MD 21158
410-848-4124 or 876-2422 (Balt)
410-876-5317 Fax
Website: www.arccarroll.com
The Arc of Frederick County
620-A Research Drive
Frederick, MD 21703
301-663-0909
301-695-6454 Fax
Website: www.arcfc.org
The Arc Northern Chesapeake Region
4513 Old Philadelphia Road
Aberdeen, MD 21001
410-836-7177 or 879-6785
410-893-3909 Fax
Website: www.arcncr.org
The Arc of Howard County
11735 Homewood Road
Ellicott City, MD 21042
410-730-0638
410-730-1436 Fax
Website: www.archoward.org
The Arc of Montgomery County
11600 Nebel Street
Rockville, MD 20852
301-984-5777
301-816-2429 Fax
Website: www.arcmontmd.org
The Arc of Prince George's County
1401 McCormick Drive
Largo, MD 20774
301-925-7050
301-925-4387 Fax
Website: www.thearcofpgc.org
The Arc of Southern Maryland
Post Office Box 1860
Prince Frederick, MD 20678
410-535-2413
410-535-1314 Fax
Website: www.arcsomd.org

The Arc of Washington County
820 Florida Avenue
Hagerstown, MD 21740
301-733-3550
301-745-5573 Fax
Website: www.arcwc-md.org
The Arc of Maryland, Easton Office
8626 Brooks Drive, Suite 305
Easton, MD 21601
410-770-9897
410-820-9106 Fax
Website: www.thearcmd.org