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Providing Healthcare
For
Special Needs Population
In
West Virginia
A Guide for the Non-Profit Health Agency
Compiled by Maryland Patient Advocacy Group
April 2005
Pearl L. Lewis 2530 Kensington Gardens #104 Ellicott City,
Maryland 21043
(410) 461-6255 [email protected]
www.kidneyadvocacy.50megs.com
Inclusion does not equal endorsement
1
mailto:[email protected]://www.kidneyadvocacy.50megs.com/
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Table of Contents
Section I: Introduction to Income Maintenance and Healthcare
Programs.................... 7 What might the disabled be eligible
for?
.............................................................................
8
How to apply for West Virginia assistance
......................................................................
9 What is Temporary Cash Assistance?
...............................................................................
12 Download WV WORKS State Plan | Download State Plan Changes –
.......................... 12 July 2004
...............................................................................................................................
12
Eligibility...............................................................................................................................
12 Educational Programs Available to Participants
............................................................. 13
Programs Available to Employers of WV WORKS Participants
................................... 14 How does CWEP help the
participant?
.............................................................................
14 How do I know if my income and resources qualify me for
Medicaid?.......................... 15 How do children in a family
with income too high for Medicaid, access healthcare?... 18
What is available for children with special healthcare needs?
................................ 23 Bringing Health Care &
Child Care Together
................................................................
26
Section II: Genetic Disease and the State’s
Role...............................................................
27 What is the Family and Physician’s Responsibility, once a
Diagnosis of a Genetic Disease is
made?...................................................................................................................
28 What has West Virginia done to address the issue of genetic
disease?........................... 28 Where can a family go for
genetic evaluation?
.................................................................
31
Genetics & IVF Institute
.........................................................................................................
33 Division of Pediatric Genetics
.............................................................................................
33 West Virginia Early Hearing Detection & Intervention (EHDI)
Information .............. 35
Section III Health and Disability Advocacy
Resources............................................... 36
Disability-Specific Organizations
.......................................................................................
40 West Virginia Parent Training and
Information.....................................................
41
Where can I go to get information about
disabilities?.................................................. 42
Untangling the Web
.................................................................................................................
42
Your complete listing of disability information on the
Web........................................ 42 Disability-Related
Resources Menu
...............................................................................
42 General Information
Resources......................................................................................
42 CONTACT US
AT:..........................................................................................................
47
Covering Kids & Families (Robert Wood Johnson Foundation)
.................. 48 Start Healthy, Stay Healthy Campaign
............................................................................
48 Insure Kids Now
...................................................................................................................
48 Shenandoah-Potomac Regional Health Care Center
.................................................. 49 National
Initiative for Children's Health Care Quality
................................................. 49 West Virginia
Hospitals
.......................................................................................................
49
....................................................................................................................................................
52
Section IV: West Virginia System of Addressing Developmental
Disabilities ............... 53 What services are available to get
children ages 0-3 off to a good start? ..................... 54
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The West Virginia KIDS COUNT Fund
.............................................................................
57 Section V: Income Maintenance/Healthcare Programs for those who
become disabled as adults who have a work history.
....................................................................................
58 How do you know if your adult client is eligible for Social
Security Disability Income (SSDI) and Medicare?
.........................................................................................................
58 When does he/she get the first SSDI
check?......................................................................
59 What is the monthly amount based
on?.............................................................................
59 When is the beneficiary eligible for
Medicare?.................................................................
59 If the beneficiary is covered by a spouse’s employee group plan
(EGHP) or under COBRA from his/her previous employer who pays
first, the EGHP or Medicare?...... 60 If the beneficiary has little
income is there help to pay the Medicare premium, which in 2005 is
$78.10?......................................................................................................................
60
Medicare Premium Assistance
Programs..............................................................................
60 QUALIFIED MEDICARE BENEFICIARY (QMB)
....................................................... 60
SPECIFIED LOW-INCOME MEDICARE BENEFICIARY (SLIMB)
........................ 60 QUALIFIED INDIVIDUAL
(QI-1)....................................................................................
61 Does West Virginia have a Medigap/Medicare Supplement Policy for
the Disabled?.. 62 Can you have both Medicare and
Medicaid?....................................................................
62 How can a Medicare beneficiary pay for their prescription drugs?
............................... 62 Is there an insurance plan for
those who due to their health condition are denied coverage in the
individual market?
....................................................................................
65 West Virginia becomes 32nd state to establish high-risk health
insurance pool ........... 65
Section VI: Special Programs for those with Kidney failure
..................................... 66 History and Role of the
Federal ESRD
System.............................................................
66 Providing Healthcare for Children with ESRD
..............................................................
67
How is the Medicare ESRD System Different from Standard
Medicare? ..................... 67 When Medicare ESRD Coverage
Begins;......................................................................
67 Who is eligible?
................................................................................................................
68 What has to be done, when a one is diagnosed, to assure coverage
under the Medicare ESRD system?
.................................................................................................
68 The Medicare ESRD Program is the ONLY portion of Medicare
available to children less than 19 years old.
.......................................................................................
68
How does the ESRD patient obtain healthcare during the 3 months
prior to Medicare coverage?
..............................................................................................................................
68 When a patient is covered under an employer group plan and
chooses Medicare who pays what?
............................................................................................................................
69 Problems:
..............................................................................................................................
69 Oftentimes a family declines Medicare due to its premiums.
.......................................... 69
Parents of ESRD children are not aware of their child’s
eligibility............................ 70 Resources in West
Virginia for ESRD
patients.................................................................
70 WV Region Southwest Virginia Regional Office
.............................................................. 70
Eastern Virginia Regional Office
.......................................................................................
70 Section VII: Health care for Adults with Disabilities on
Medicaid................................. 71 What Medicaid Waivers
are
available?.............................................................................
71 Where can adults go to get primary care if they are
uninsured?.................................... 72
Primary Care Centers and Satellite Clinics
..........................................................................
73
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Section VIII: What other program are available to help families
with disabled children/adults in their
home?............................................................................................
73
Family Support Program
.....................................................................................................
73 Medicaid, Social Security and Other Entitlement Programs
.......................................... 74 Housing, Employment,
Community Supports and
Services............................................ 75 Assistive
Technology............................................................................................................
77
Recreation.............................................................................................................................
78 How do you locate mental health services?
.......................................................................
79 What respite or support services for persons with developmental
disabilities are available?
..............................................................................................................................
85 BUREAU FOR BEHAVORAL HEALTH & HEALTH
FACILITIES.......................... 85
MR/DD Waiver
Program.......................................................................................................
85 MR/DD Crisis
Services.........................................................................................................
86
What alternative living arrangements are available for young
people who no longer are able to remain at home?
......................................................................................................
89
The Center for Excellence in
Disabilities.......................................................................
89 Residential Support
.................................................................................................................
90
....................................................................................................................................................
92 How do I Find and Check the Record of a Skilled Nursing
Facility?............................. 97 Section IX: Educating the
Disabled
Child.........................................................................
97 West Virginia Early Childhood Transition Committee
................................................... 97 West
Virginia Vocational Schools and
Colleges................................................................
98
Special Needs Camps
Sub-Categories....................................................................................
98 Asthma (13)
......................................................................................................................
98 Learning Disabilities and ADHD (59)
...........................................................................
98 Mainstreaming (5)
...........................................................................................................
98 Mental Retardation (19)
.................................................................................................
98 Muscular Dystrophy (0)
..................................................................................................
98 Other Special Needs
(10).................................................................................................
98 Physical Disabilities (18)
.................................................................................................
98 Speech Impaired (2)
........................................................................................................
98 Spina Bifida (5)
................................................................................................................
98 Substance Abuse (2)
........................................................................................................
98 Tourette’s Syndrome (3)
.................................................................................................
98 Autism (14)
.......................................................................................................................
98 Blood Disorder (3)
...........................................................................................................
99
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Burn (7)
............................................................................................................................
99 Cancer
(22).......................................................................................................................
99 Cerebral Palsy (8)
............................................................................................................
99 Cystic Fibrosis (2)
............................................................................................................
99 Developmental Disabilities
(28)......................................................................................
99 Diabetes
(55).....................................................................................................................
99 Epilepsy
(3).......................................................................................................................
99 Hearing Impaired (4)
......................................................................................................
99 HIV and AIDS
(5)............................................................................................................
99
Section X: Planning for Your Disabled Child’s Future
................................................. 100 Section XI:
Assistive Technology Resources
...................................................................
101
Assistive Technology Demonstration Clinics (AT
Clinics)......................................... 102 Section XII:
Information/Resources
................................................................................
113 Section XIII: How does West Virginia provide transportation and
other services for the disabled population?
...................................................................................................
114
Transportation
Assistance.....................................................................................................
114 Transportation Remuneration Incentive Program (TRIP)
........................................... 114 Non-Emergency
Medical Transportation (NEMT)
........................................................ 114
Traveling for the
Disabled.................................................................................................
117 Utility Subsidies and Services for the
Disabled...............................................................
118
West Virginia Weatherization and Low-Income Energy
Programs................................. 119 West Virginia
Weatherization
..........................................................................................
119
West Virginia Weatherization
Overview.....................................................................
120 Energy and Low-Income Heating Assistance (LIHEAP) in West
Virginia.................. 120
Complete List of West Virginia's Low-Income Energy
Programs............................ 120 State Energy Assistance
Programs...............................................................................
120
West Virginia Publications and Links
.............................................................................
120 DOE
Publications...........................................................................................................
120 More Weatherization
Publications...............................................................................
120 Lifeline and Link-Up for CellularOne Customers in West Virginia
....................... 121
Section XIII:: Caregiver Resources from Our Final Journey
............................... 122 At Home
Care.....................................................................................................................
122 Burnout
...............................................................................................................................
124 Caregiving Articles
............................................................................................................
124
Depression...........................................................................................................................
124 Hands on
Help....................................................................................................................
125 Helping Your
......................................................................................................................
125 Loved
One...........................................................................................................................
125 Legal
....................................................................................................................................
125 Out of Home
.......................................................................................................................
126
Palliative Care...................................................................................................................
126 Caregivers
..........................................................................................................................
126
Guilt.....................................................................................................................................
126
Respite.................................................................................................................................
126 Self
Help..............................................................................................................................
127
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Sleep
....................................................................................................................................
127 Tools for Caregiving
..........................................................................................................
128 Ways to Care
......................................................................................................................
129 Section XIV:
Hospice.........................................................................................................
129 Edmarc Nursing Support
..................................................................................................
130 Edmarc Family
Support....................................................................................................
130 Edmarc Bereavement Support
.........................................................................................
130
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Section I: Introduction to Income Maintenance and Healthcare
Programs
This document has been prepared for non-profit health agencies
to help you assist special needs clients obtain income maintenance,
healthcare and special and vocational education. We have also tried
to include supportive services both the disabled individual and the
family might require. Based on the severity of their condition they
will either be eligible for benefits through the Social Security
System by MEETING THE SOCIAL SECURITY DISABILITY CRITERIA for
either CHILDREN or ADULTS as listed in the Social Security Blue
Book: A set of medical guidelines that must be met to award
disability and Medicaid/Medicare benefits. To see the Adult
Listings go to
http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm
To view the Childhood Listings go to
http://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm
or if the condition has not reached that severity level through
various state programs based on income. We have addressed resources
for all age groups because no matter at what age a condition is
diagnosed life time care is required. Who is it that decides if one
is disabled or not? Disability Determination Services: Branch of
state government that adjudicates medical eligibility for Social
Security Disability benefits.
http://www.wvdrs.org/Service_to_PWD.html DDS is located within
the:
This Department provides rehabilitative services for the
disabled. For information contact Barbara King at
[email protected]
7
http://www.ssa.gov/disability/professionals/bluebook/http://www.ssa.gov/disability/professionals/bluebook/AdultListings.htmhttp://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htmhttp://www.wvdrs.org/Service_to_PWD.htmlmailto:[email protected]
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For over two decades, as both a patient myself as well as the
parent of three adult children with genetic diseases, I have
advocated for individuals with chronic illnesses and their families
in their quest for both healthcare, personal services and income.
This document is based on the questions I have been asked and the
answers I have identified. I have tried to create a document,
comprised of West Virginia and other websites, which would provide
the basic information in one concise document. While I have
included hundreds of links to resources, the basic information can
be found within these pages. I have addressed the many issues we
all face – transportation, education, planning for the future when
we, the parents, are not longer around, access to healthcare,
income maintenance and support for the family/caregiver. Many
issues appear several times because they can appropriately be
viewed under several categories. I welcome your input.
What might the disabled be eligible for? To aid you in
identifying what your client/family member might be eligible for we
are beginning this document with the eligibility guidelines for the
main income and healthcare programs. These guidelines will appear
again in the section that explains the program in depth.
• Supplemental Security Income (SSI) for the disabled, blind
and
elderly with resources below $2,000 ($3,000 for a couple) and
income below $579 per month – making one categorically eligible for
Medicaid
• Temporary Cash Assistance - temporary help for needy men,
women and children if unable to work, can't find a job, or the job
does not pay enough, TA may be able to help pay expenses.
• Medicaid which for those eligible for SSI and children up to
age 19 below 133% of poverty are eligible
• Children’s Health Insurance Program or CHIPs for children
above 133% of poverty to 200% of poverty.
• Emergency Assistance
The emergency assistance program is used to assist individuals
and families in meeting a financial crises when they are without
available resources. The program is designed to provide short-term
emergency financial assistance with which eligible individuals and
families may obtain items or services needed to eliminate an
emergency or crisis. Items of need include rent, utilities, food,
household supplies, clothing, transportation and medical service.
Assistance is limited to one 30 consecutive day period during any12
consecutive months.
Learn more by calling or visiting your local county DHHR office
or reviewing Chapter 19 of the Income Maintenance Manual.
8
http://www.wvdhhr.org/bcf/county/http://www.wvdhhr.org/bcf/policy/imm/new_manual/IMManual/Manual_HTM_Pages/IMChapter19.htmhttp://www.wvdhhr.org/bcf/policy/imm/new_manual/IMManual/Manual_HTM_Pages/IMChapter19.htm
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SSI stands for Supplemental Security Income. SSI , a Federal
program run by the Social Security Administration (SSA), pays a
monthly benefit of up to $579 (effective January 1, 2005) to
disabled individuals in West Virginia who may have limited
"on-the-books" work history, or low income and limited
assets.($2000 for an individual and $3,000 for a couple). It may
also pay benefits to eligible people who are waiting for Social
Security Disability Insurance (SSDI) to start.
Some states supplement the amount the Federal Government pays.
West Virginia does not and thus the Federal Government pays $579 to
an individual living alone ($869 to disabled married couples). Your
SSI Award Letter will include this information.
To apply for SSI go to: SSA Office Locator
How to apply for West Virginia assistance
inROADS - the Information Network for Resident Online Access and
Delivery of Services - evaluates you for possible eligibility and
allows you to apply for benefits offered by the state of West
Virginia. Here is how inROADS can help you:
• The self-screening process evaluates you for possible
eligibility and can tell you which benefits the members of the
household may be eligible to receive.
• The application lets you apply online for multiple benefits
offered by the West Virginia Department of Health and Human
Resources (WVDHHR) by completing one online application.
You may screen for Food Stamps, Healthcare, Long Term Care, Cash
Assistance (WV WORKS), Medicare Premium Assistance Programs,
Transportation Remuneration Incentive Program (TRIP), Non-Medical
Emergency Transportation (NEMT), School Clothing Allowance (during
SCA season only), and/or Low Income Energy Assistance Program
(during LIEAP season only). In addition, you may apply online for
Medicaid for Children and Pregnant Women, West Virginia Children's
Health Insurance Program (WVCHIP), Food Stamps (a face-to-face
interview is required), Medicare Premium Assistance Programs,
Transportation Remuneration Incentive Program (TRIP), School
Clothing Allowance (during SCA season only), and/or Low Income
Energy Assistance Program (during LIEAP season only). Click on a
link to learn more about West Virginia's Benefits, Browser
Compatibility, or
9
http://s3abaca.ssa.gov/pro/fol/fol-home.htmlhttps://www.wvinroads.org/inroads/PGM/ASP/SC020.asp?hdn_SessionId=7527385827867041105144155&hdn_ProcessId=6
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Federal Benefits. What do you want to do? Once you have made
your choice, please click on the Continue button at the bottom of
the screen.
Complete the screening process to evaluate possible
eligibilityApply online for benefits Complete an unfinished
application View a finished application
Click here to log on as a Community Partner (worker in a
hospital, health center, etc.)
Healthcare
Children's Health Insurance Program (CHIP)
Food Stamps
Long Term Care
Cash Assistance (WV WORKS) Medicare Premium Assistance
Programs
TRIP NEMT
School Clothing Allowance Low Income Energy Assistance
Program
Bureau for Medical Services
Welcome to inROADS Welcome to inROADS Self-Screening Here's how
it works: inROADS asks questions about members of the household in
order to evaluate possible eligibility for benefits offered to West
Virginia residents. You need to enter correct information about the
members of the household to accurately screen for benefits through
inROADS. At the end of the screening process, you can apply for
Medicaid for Children and Pregnant Women, the West Virginia
Children's Health Insurance Program, Food Stamps, Medicare Premium
Assistance Programs, TRIP, School Clothing Allowance (during SCA
season only), and/or Low Income Energy Assistance Program (during
LIEAP season only). If you choose to apply, the information you
give during the screening process will be automatically transferred
to the application. The information you enter is confidential. If
you do not want to apply at this time, the information will be
erased at the end of the screening process. You can always apply
for
10
http://www.govbenefits.gov/jsp/GovBenefits.jsphttps://www.wvinroads.org/inroads/PGM/ASP/SC020.asp?hdn_SessionId=7527385827867041105144155&hdn_ProcessId=9http://www.wvdhhr.org/bcf/family_assistance/medicaid.asphttp://www.wvchip.org/http://www.wvdhhr.org/bcf/family_assistance/fs.asphttp://www.wvdhhr.org/http://www.wvdhhr.org/bcf/family_assistance/wvworks.asphttp://www.wvdhhr.org/bcf/family_assistance/p_medicare.asphttp://www.wvdhhr.org/bcf/family_assistance/ta.asphttp://www.wvdhhr.org/bcf/family_assistance/ta.asphttp://www.wvdhhr.org/bcf/family_assistance/sca.asphttp://www.wvdhhr.org/bcf/family_assistance/utility.asphttp://www.wvdhhr.org/bms
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any benefits (with the exception of SCA and LIEAP which are
seasonal programs) offered by the West Virginia Department of
Health and Human Resources (WVDHHR). The screening process can only
determine what a household MAY be able to receive. An application
for benefits must be submitted to determine actual eligibility.
Food Stamps: Please Note: If your household meets one of the
following emergency situations, please apply at your local WVDHHR
office for immediate help. You may be eligible to receive Food
Stamps faster if you:
• Are a migrant or seasonal farm worker • Have assets of less
than $100 and income less than $150 per month • Have less income
and savings this month than your combined shelter/utility costs
Cash Assistance (WV WORKS): Please Note: The WV Works Program is
a work first program. Each parent or caretaker who is included in
the check has the responsibility to participate in an activity such
as Job Search, Employment, Community Service (volunteer work),
Educational Activities or Job Skills Training. Most individuals not
meeting a temporary exemption will be required to participate
between 20-55 hours per week depending upon who lives in the
household and who is included in the payment. Low Income Energy
Assistance Program (LIEAP): Please Note: If your household meets
one of the following emergency situations, please apply at your
local WVDHHR office for immediate help. You may be eligible to
receive LIEAP faster if your:
• Household is without home heating or is in immediate danger of
being without home heating
• Household has received a termination notice from the home
heating vendor • Household has run out of bulk fuel
Please select the program(s) for which you would like to screen.
Once you have made you choice, please click on the Continue button
at the bottom of the screen:
Screen for all available program(s) listed below:
Healthcare Benefits
Food Stamps
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Long Term Care (Nursing or In-Home Care)
Cash Assistance (WV WORKS)
Medicare Premium Assistance Programs
Transportation Remuneration Incentive Program (TRIP)
Non-Emergency Medical Transportation (NEMT)
School Clothing Allowance (SCA) - Screening for SCA is available
during the published SCA program dates during the month of July.
For more information please contact your local WVDHHR office.
Low Income Energy Assistance Program (LIEAP) - Screening for
LIEAP is available during the published LIEAP program dates during
the fall/winter season. For more information please contact your
local WVDHHR office.
Click here to learn how to use inROADS
To complete the entire process go to InRoads Website.
What is Temporary Cash Assistance? Online Screening now
available through inROADS!
Download WV WORKS State Plan | Download State Plan Changes –
July 2004
West Virginia's Temporary Assistance for Needy Families (TANF)
Program is WV WORKS. It is based on the goals of assisting
economically dependent and at-risk families to become self
supporting, enhancing the well-being of children, and on assisting
families near the poverty level to remain self-sufficient.
WV WORKS provides monthly cash assistance to eligible families.
Most people who receive a monthly WV WORKS check also receive Food
Stamps and Medicaid, but these are not guaranteed based just on
receipt of a check.
Eligibility
There are 2 steps to the eligibility process. Step 1 is a gross
income test. The family's gross income must be below an amount that
varies by family size. If this income test is passed, certain other
deductions are applied to the income to determine the amount of
the
12
https://www.wvinroads.org/inroads/PGM/ASP/SC020.asp?hdn_SessionId=7527385827867041105144155&hdn_ProcessId=8https://www.wvinroads.org/inroads/PGM/ASP/SC020.asp?hdn_SessionId=7527385827867041105144155&hdn_ProcessId=8https://www.wvinroads.org/inroads/PGM/ASP/SC020.asp?hdn_SessionId=7527385827867041105144155&hdn_ProcessId=10https://www.wvinroads.org/inroads/PGM/ASP/SC002.asphttp://www.wvinroads.org/http://www.wvdhhr.org/bcf/family_assistance/documents/stateplan_2003.pdfhttp://www.wvdhhr.org/bcf/family_assistance/FY2005_TANF
State Plan_1.pdf
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benefit. These are: 40% of earned income; up to the first $50 of
child support, child care expenses. There is 1 incentive payment
paid monthly based on case circumstances: $25 child support
incentive payment when child support is redirected to the Bureau
for Child Support Enforcement.
Support service payments are available to active participants or
those preparing to participate in a work activity. These same
payments are available to former recipients for 6 consecutive
months after case close as long as the family income does not
exceed 150% of the federal poverty level. There are lifetime limits
on the amount of support service payments, but payment may be
issued based on need, for the following items: clothing, tools,
equipment, driver's license, chauffeur's license, commercial
driver's license, professional license, relocation expenses,
transportation, vehicle repair, vehicle insurance, and other
incidental expenses relation to participation in an approved work
activity.
In addition to financial eligibility, the client is required to
perform 2 additional tasks before final eligibility is determined.
Orientation to WV WORKS may be done in a group or individually.
Applicants are required to attend orientation to learn about
available activities and services and for an explanation of the
60-month lifetime limit for receipt of benefits. In addition, each
adult or emancipated minor is required to negotiate a personal
responsibility plan. This plan is an agreement between the
applicant and DHHR which identifies goals, objectives and actions
that must be taken in order to become self-sufficient. The personal
responsibility plan may be renegotiated at any time; it is an
ever-changing document. Within the first 45 days a home visit will
be completed by the WV WORKS Case Manager. Failure of the active
recipient to adhere to the personal responsibility contract,
without good cause, results in application of a sanction to the
household. Sanctions are as follows:
• 1st sanction = 1/3 reduction in the total check amount for 3
months • 2nd sanction = 2/3 reduction in the total check amount for
3 months • 3rd and any subsequent sanction = case ineligibility for
3 months
More specific information about eligibility requirements is
available from the local office in the county in which you live.
Information about acceptable work activities, special programs and
employer incentives is available below at this same site.
Educational Programs Available to Participants Assessment
Testing
Five Department of Education Assessment Specialists administer
the Test of Adult Basic Education (TABE) or Comprehensive Adult
Student Assessment System (CASAS), Work Keys, Emotional Health
Inventory (EHI) and Learning Needs Screening to WV WORKS Assistance
Group (AG) Adults statewide. These assessment tests measure
individuals’ grade levels in areas such as math, reading
comprehension, and vocabulary. Work Keys measures skills required
for specific jobs. Work Keys indicates if individuals meet the
required skills for particular jobs, as well as areas that
individuals need to upgrade in order to meet minimum skill levels.
The Learning Needs Screening helps identify individuals who may
13
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have learning disabilities and can lead to further diagnostic
testing and referral to available services. The Emotional Health
Inventory (EHI) is administered and used as a screening device to
identify potential mental health and substance use issues.
Individuals may be referred to mental health professionals for
further diagnosis.
Programs Available to Employers of WV WORKS Participants Joint
Opportunities for Independence (JOIN)
JOIN is a work experience and skill's activity operated in the
private or public sector. Placements with JOIN sponsors try and
match the client's interest. For JOIN the amount of Food Stamps and
cash assistance received, divided by the federal minimum wage, will
determine the number of hours to be worked not to exceed 40 hours
per week. JOIN placements may not exceed 12 consecutive months.
JOIN contractors must provide Workers' Compensation or comparable
coverage.
Employer Incentive Program (EIP)
This is a hire first program with a public or private sector
businesses licensed to do business in West Virginia. These
contracts are for a minimum of 30 hours per week not to exceed 40
hours per week. The minimum number of hours for each contract is
200 and may not exceed 600. The clients will be hired by an
employer and receive no less than the minimum wage per hour. The
employer will be reimbursed 50% of the salary indicated in the
contract by the Department of Health and Human Resources.
Community Work Experience Program (CWEP)
CWEP is a work activity for parents or other care taker
relatives age 18 and older. CWEP sponsors are limited to federal,
local, state and nonprofit agencies. Eligible clients will be
assisted in finding agencies in which to participate.
How does CWEP help the participant?
CWEP provides work experience to participants of WV WORKS who
have little or no work history. A participant’s assignment is
determined by adding the:
• The amount of the Food Stamps and cash assistance received,
divided by the federal minimum wage.
• The number of hours required to work cannot exceed 40 hours
per week. CWEP placements must not exceed 12 consecutive months.
CWEP sponsors must provide Workers' Compensation or comparable
coverage.
14
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Any CWEP placement can be used on a participant’s resume, when
searching for employment.
How do I know if my income and resources qualify me for
Medicaid? Eligibility for many federal and state programs are based
on the Federal Poverty Guidelines
Income Eligibility for Non-Working Parents Under Medicaid, as a
Percent of Federal Poverty Level (FPL), 2004
WV
% WV $
US %
US $
Non-Working Parents 19 3,036 1 NA 2 NA 2 Working Parents 38
5,992 1 NA 2 NA 2 West Virginia: Income Eligibility Levels for
Children under Medicaid, as a Percent of Federal Poverty Level
(FPL), 2004
Income Eligibility Levels for Children Under Medicaid, as a
Percent of Federal Poverty Level (FPL), 2004
WV
% WV $
US %
US $
Medicaid Infants Ages 0-1 150 23,505 NA 1 NA 1 Medicaid Children
Ages 1-5 133 20,841 NA 1 NA 1 Medicaid Children Ages 6-19 100
15,670 NA 1 West Virginia: Income Eligibility Levels for Other
Medicaid Enrollment Groups as a Percent of Federal Poverty
Level
Income Eligibility Levels for Other Medicaid Enrollment Groups
as a Percent of Federal Poverty
WV
% US %
Supplemental Security Income (SSI), 2000
74 NA 1
Aged, Blind and Disabled NA 2 NA 1
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(OBRA '86), 2001
Medically Needy Eligibility as a Percent of Federal Poverty
Level, 2001
WV
% US %
Medically Needy - Individual 28 NA 1 Medically Needy - Couple 28
NA 1 How Income is calculated for Medicaid for Children and
Pregnant Women and WVCHIP 1. Count earned income from job wages or
salary first. 2. Make sure you use gross income. 3. Be sure to use
the amount as it is shown on any document copies (such as pay
stubs).4. For application review purposes, all income shown will be
converted to a monthly
basis as shown in this table.
Examples On How to Calculate Your Monthly Income If Your Pay
Check Is...
To Find Your Monthly Amount (Before Taxes)
Monthly Income Result
Weekly 52 Checks Per Year
Multiply by 2.15 $175.35 x 4.3 =$754
Bi-Weekly 26 Checks Per Year
Multiply by 2.15 $350.70 x 2.15 =$754
Semi-Monthly 24 Checks Per Year
Multiply by 2 $377.00 x 2 =$754
Bi-Monthly 6 Checks Per Year
Divide by 2 $500 divided by 2 =$250
Quarterly 4 Checks Per Year
Divide by 3 $750 divided by 3 =$250
Semi-Annual 2 Checks Per Year
Divide by 6 $1,500 divided by 6 =$250
Annual 1 Check Per Year
Divide by 12 $3,000 divided by 12 =$250
Self Employed: You may state your business income either
monthly, quarterly, or yearly. Your self-employment income is
counted minus allowable business expenses paid. Allowable
deductions: Employee labor costs, stock and supplies, raw material,
seed, fertilizers, repair and maintenance on machinery or property,
cost of rental space used for conducting business, interest &
taxes, but not principal paid on purchase of capital assets,
interest & taxes on a portion of the residence used to produce
income, advertising costs, utilities, office expenses (stamps,
pens, etc.) and legal costs. Subtracting Income
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Disregards: There are several income disregards that may help
you qualify for the program if your income is above the maximum
limit for your family size. Income disregards are subtracted from
each applicant's gross income. Listed below are the types of
disregards available to applicants:
• $90 monthly deduction for each parent or child working
full-time or part-time • $50 monthly deductions on total child
support income • up to $175 monthly deductions for child care
expenses for each child over age 2 • up to $200 monthly child care
deduction for each child under age 2
Example before tax: $2,080 monthly income - $180 (both parents
work) - $200 (child care expenses for a child under the age of 2) =
$1,700 qualifying income for a family of three. Your calculated
income (after subtracting income disregards) is compared to an
income limit. The income limit is based on the number of people in
your household and the type of program for which you qualify. You
can learn more about the application guidelines at West Virginia
Children's Health Insurance Program (WVCHIP) and Medicaid for
Children and Pregnant Women.
2005 HHS Poverty Guidelines Persons in
Family Unit 48 ContiguousStates and D.C. Alaska Hawaii
1 $ 9,570 $11,950 $11,010
2 12,830 16,030 14,760
3 16,090 20,110 18,510
4 19,350 24,190 22,260
5 22,610 28,270 26,010
6 25,870 32,350 29,760
7 29,130 36,430 33,510
8 32,390 40,510 37,260
For each additional person, add 3,260 4,080 3,750
SOURCE: Federal Register, Vol. 70, No. 33, February 18, 2005,
pp. 8373-8375.
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How do children in a family with income too high for Medicaid,
access healthcare?
Esta página disponible en español
WVCHIP was created to help working families who do not have
health insurance for their children.
You want your kids to be healthy. One good way to keep them
healthy is making sure they get medical care. Children who get good
medical care have a better chance of being healthy and doing well
in school.
Services covered by WVCHIP:
Doctor visits Check-ups Hospital visits Immunizations (Shots)
Prescriptions Tests and X-rays Dental care Vision care Emergency
care 24 hour Nurseline Mental Health Diabetic supplies Urgent Care
or After Hour Clinic
Visits Case Management for Special
Needs And more…
Click here for a complete summary of WVCHIP covered
services.
When your child goes to the doctor or gets a prescription filled
at the pharmacy there may be a small
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fee called a co-pay for some services. You do not pay for
check-ups, dental care, vision care or generic prescriptions.
Click here to learn more about copayments.
To find out if your family is eligible for WVCHIP, click here:
Eligibility Information.
NURSELINE
As part of the Plan, WVCHIP provides “Nurseline” -- Nurseline is
a toll-free helpline that WVCHIP families can call anytime, night
or day, seven days a week. If your physician’s office is closed for
the weekend, and you must decide if your child’s symptoms need
immediate medical attention – you can talk with a certified nurse
who will give you health information to help you make that
decision. Call Nurseline at 1-877-294-7342.
Case Management for Special Needs
If a child covered under WVCHIP has a long term illness or
condition (for example, juvenile diabetes or chronic asthma).
Acordia National’s case management program can help you learn about
available resources, provide support for your family, and find ways
to contain medical costs. Through medical case management, Acordia
National can help you arrange home care, obtain discounts for
special medical equipment, and locate appropriate services to meet
the child’s health care needs. To take advantage of these services,
contact Acordia National at 1-800-356-2392.
Your children are eligible if they:
Live in West Virginia Are 18 or younger Don’t have health
insurance now and haven’t had it in the past six months
(some exceptions apply, click here for more information) Are not
eligible for the West Virginia State Employee Health Insurance
–
PEIA Are not eligible for West Virginia Medicaid Live in
families meeting WVCHIP Income Guidelines Are United States
citizens or qualified aliens (Children who are not U.S.
citizens must provide verification of their alien status.)
American Indian or Native Alaskan Eligibility
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Whose income is counted?
Can my family qualify for WVCHIP if our income is over the
amount listed on the income chart?
What types of deductions are allowed if I am self-employed?
What types of documents can I use to verify my income?
Is Social Security (SSI) or Social Security Disability (RSDI)
income counted for WVCHIP eligibility?
How is income counted for WVCHIP?
Where can my family get health care if we don’t meet the WVCHIP
guidelines?
Income Guidelines WVCHIP income guidelines are based on family
size. Family size means the number of parents living with their
natural or adopted children plus the number of children under age
19.
Whose Income Is Counted? Only the income of the child and/or the
natural or adoptive parent is counted to qualify. This means income
from grandparents, stepparents, or other relatives or adults in the
home are not counted as part of the qualifying income level.
- Blended Family For example, a family of five blended from
prior marriages with two children biologically related to the
father and one to the mother will have their income counted in two
separate qualifying groups. Their income will only be counted as a
family of five if one parent has legally adopted their
stepchildren.
- Grandparents Only the income of the child will be counted when
being raised by grandparents (unless the child is legally adopted
by the grandparents).
- Expecting A Child If you are expecting a child and would like
the child to be counted as a part of your family size to qualify
for WVCHIP, the pregnancy must be confirmed with a doctor's
statement. WVCHIP does not cover labor or delivery costs for the
child. After the child has been born and you want to apply for
coverage for the child under WVCHIP, you can call the Department of
Health and Human Resources Customer Service Center (DHHR CSC) at
1-877-716-1212. All claims related to the child will be put on hold
by WVCHIP until a social security number has been reported to the
DHHR CSC for the child being born. Please remember to apply for the
child's social security card right away and report the social
security number immediately upon receiving.
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Group A
Drug Co-Pays OnlyGroup B
All Co-Pays ApplyFamily Size
Per Month Annual Per Month Annual
2 $1,604 $19,245 $2,139 $25,660
3 $2,012 $24,135 $2,682 $32,180
4 $2,419 $29,025 $3,225 $38,700
5 $2,827 $33,915 $3,769 $45,220
6 $3,234 $38,805 $4,312 $51,740
7 $3,642 $43,695 $4,855 $58,260
8 $4,049 $48,585 $5,399 $64,780
*Add $3,260 (annually) for each additional member over 8
Click here for information about co-payments.
Can my family qualify for WVCHIP if our income is over the
amount listed on the income chart? There are several income
disregards that may help you qualify for the program if your income
is above the maximum limit for your family size. Income disregards
are subtracted from each applicant’s gross income. Listed below are
the types of disregards that are available to applicants:
$90 monthly deduction for each parent working full-time or
part-time $50 monthly deduction on total child support income Up to
$175 monthly deduction for child care expenses for each child
over
age 2 Up to $200 monthly deduction for child care expenses for
each child under
age 2 Up to $175 monthly deduction for dependent adult care
expenses
What types of deductions are allowed if I am self-employed? Your
self-employment income is counted minus allowable business expenses
paid. WVCHIP allows the following deductions: employee labor costs,
stock and supplies, raw material, seed, fertilizers, repair and
maintenance on machinery or property, cost of rental space used for
conducting business, interest & taxes, but not principal paid
on
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purchase of capital assets, interest & taxes on a portion of
residence used to produce income, advertising costs, utilities,
office expenses (stamps, pens, etc.) and legal costs.
What types of documents can I use to verify my income?
Pay stubs or earning statements for the last thirty days Most
recent quarterly or yearly tax return, if self-employed Proof of
most recent alimony and/or child support payment or court
order,
if applicable Proof of most recent payment or current award
letter for Social Security,
SSI, Worker’s Compensation, Unemployment benefits, Veteran’s
benefits, or any other income source
If your income is seasonal or highly variable through the year,
income is based on what you have earned in the month you are
applying. You may also use your yearly tax return
Is Social Security (SSI) or Social Security Disability (RSDI)
income counted for WVCHIP eligibility? SSI is not countable income
and also the person who receives SSI is not counted in the family
size. For example, if you have a family of 6 (2 parents and 4
children) and 2 children are receiving SSI, then it would be
considered a household of 4. This family would have to fall within
the income guidelines of a family of 4 not a family of 6.
RSDI is countable income. For example, if you have a family of 4
(father receives $1,000 RSDA; mother receives $500 RSDI; and the
two children are receiving $250 a piece), the family income would
be counted as $1,750 (not $2,000- because one child's income is not
counted against the other). The family would have to fall within
the income guidelines of a family of 4.
How Is Income Counted for WVCHIP? Applications are reviewed
based on most recent income received in the month (equal to the
past 30 day period). All income shown on your application form will
be converted to a monthly basis as shown on this table:
Examples On How To Calculate Your Monthly Income
If Your Pay Check Is…
To Find Your Monthly Amount (Before Taxes)
Monthly Income Result
Weekly 52 checks per year
Multiply by 4.3 $175.35 x 4.3 = $754
Bi-Weekly 26 checks per year
Multiply by 2.15 $350.70 x 2.15 = $754
Semi-Monthly Multiply by 2 = $754
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24 checks per year $377.00 x 2
Bi-Monthly 6 checks per year
Divide by 2 $500 divided by 2 = $250
Quarterly 4 checks per year
Divide by 3 $750 divided by 3 = $250
Semi-Annual 2 checks per year
Divide by 6 $1,500 divided by 6 = $250
Annual 1 check per year
Divide by 12 $3,000 divided by 12 = $250
Where can my family get health care if we don’t meet the WVCHIP
guidelines? There are many facilities in the state of West Virginia
that offer discounted or free services to families who do not have
health insurance. Click on one of the resources listed below for
more information:
West Virginia Primary Care Association Free Health Clinics
Health Insurance Paid Premium Hill-Burton Act
OUCH CAP
What is available for children with special healthcare
needs?
Medical conditions eligible to receive CSHCN services include
but are not limited to:
• Conditions which involve bones, joints or muscles • Heart
conditions • Epilepsy and other convulsive conditions •
Neurological conditions, such as cerebral palsy and spina bifida •
Certain operable eye conditions, such as crossed eyes and
congenital
cataracts • Kidney and urological conditions, including those
requiring dialysis
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• Cleft lip/palate and other conditions requiring plastic
surgery, such as burns
• Ear, nose and throat conditions requiring treatment by an
otolaryngologist
• Hearing loss, including hearing aid placement and related
services • Other chronic conditions, such as cystic fibrosis and
sickle cell anemia
What services does CSHCN provide?
Upon application for the CSHCN program, any child living in West
Virginia who is under 21 years of age is eligible to receive a
medical evaluation to establish a medical diagnosis, if needed. If
the child is enrolled in Medicaid, CHIP or has private insurance
coverage, the cost of the evaluation will be billed to that
coverage source.
• Applicants for Children with Special Health Care Needs (CSHCN)
services must first apply for Medicaid and the West Virginia
Children’s Health Insurance Program (CHIP) at their local
Department of Health and Human Resources (DHHR) office. Information
submitted to the local DHHR office during this process is used to
determine financial eligibility for CSHCN services.
• Children with Special Health Care Needs Program eligibility is
based upon the following factors:
1. The child must be under 21 years of age.
2. The child must reside within the State of West Virginia.
Exception: Children in the custody of the WVDHHR in out-of- state
placements are eligible.
3. The child must have a medical diagnosis which is eligible for
CSHCN coverage. Click here to go to list of Medical Conditions
Eligible for the CSHCN Program.
4. Income eligibility is determined according to the allowable
percentage of Federal Poverty Level scale.
Levels of participation for clients for CSHCN services are:
• Evaluation (EL) - Applicants will participate at the
evaluation (EL) level until program eligibility is established.
Only private office appointments, CSHCN clinic appointments, and
testing needed for evaluation (determination of medical
eligibility) can be authorized prior to income
determination/verification.
• Care Management (CM) – Enrolled clients will receive only
health care management services to facilitate medical treatment
when they have health care funding sources, i.e., Medicaid, CHIP,
private health
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insurance, which cover medically necessary services/treatment of
CSHCN-approved diagnoses. For these clients, all medical treatment
is funded by the other funding source(s), i.e., Medicaid, CHIP,
private health insurance.
• Limited Coverage (LC) – Enrolled clients may be eligible for
limited coverage if their primary coverage source will not cover
medically necessary services/treatment of CSHCN-approved diagnoses.
Medical necessity will be determined by CSHCN only after coverage
is denied by the primary insurer. CSHCN may fund services or
equipment for CSHCN eligible diagnoses if these items are not
covered by the primary source. A completed Certification of Lack of
Medical Insurance (CSHCN-1A), or a denial by the insurer of the
service requested is required. To maximize resources, CSHCN will
attempt to coordinate benefits on CSHCN-approved items for persons
with insurance.
• Title V (TV) – Enrolled clients with no other funding source
for CSHCN-approved medical diagnoses will have program approved
services paid for through CSHCN/Title V. These clients must reapply
annually for Medicaid and CHIP.
Insurance coverage does not preclude a child’s participation in
the program. Applicants must certify that the child does not have
health/medical insurance, or that available insurance covers less
than 80% of the child’s medical care.
• Benefits from other coverage sources (Medicaid, CHIP or
private insurance) must be used before a service can be covered by
CSHCN funds. CSHCN does not cover insurance co-pays or
deductibles.
• Reimbursement of money paid by CSHCN for care is required if a
legal or insurance settlement is received.
• Children who have a diagnosis covered by CSHCN and receive WV
Medicaid cards or Children’s Health Insurance Program are eligible
to receive care management and/or limited services from the
program.
What medical conditions are covered by CSHCN?
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You may contact us at 1-800-642-8522 or go to the Contact Us
Page to reach us by email.
The Office of Maternal, Child and Family Health, Bureau for
Public Health has within its realm of services a program dedicated
to Birth Defects Surveillance. The CARESS Program stands for
Congenital Abnormalities Registry, Education and Surveillance
System. Currently the program collects data from the birthing
facilities within the state to study the rates and trends of birth
defects to aid in determining possible causes.
The Program serves as an early identification system to ensure
necessary linkages are in place between health care agencies and
the infants, families and children to receive the best care
possible.
An additional component of the CARESS Program involves community
outreach and education on birth defects prevention within the
state. Outreach efforts to West Virginia high schools, colleges and
community groups are in place to educate people on both risk
factors and prevention associated with congenital
abnormalities.
The goals of the CARESS Program are:
Collect consistent and accurate data regarding birth defects
incidence in a timely manner.
Acquire case information from medical records at all hospitals,
clinics and facilities where the infant was born.
Refer infants, children, and families to health care agencies to
ensure they receive the best care possible.
Educate health care providers and support staff about registry
importance and requirements.
Study the rates and trends of birth defects in West Virginia to
determine possible indicators.
Share findings on congenital abnormalities surveillance and
education.
Bringing Health Care & Child Care Together
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Program Overview
Early Childhood Health Project (ECHP) is supported by the
Maternal & Child Health Bureau (Title V, Social Security Act),
Health Resources and Services Administration, U.S. Department of
Health and Human Services. The organizational home of ECHP is the
West Virginia Department of Health & Human Resources
(DHHR)/Office of Maternal, Child and Family Health/Division of
Infant, Child and Adolescent Health/Early Childhood Health
Project.
Partners in ECHP include the DHHR/Bureau for Children and
Families and the West Virginia Chapter of the American Academy of
Pediatrics.
ECHP Partners
WV DHHR: Office of Maternal, Child & Family Health
The Office of Maternal, Child & Family Health is the
organizational home of the Early Childhood Health Project.
WV DHHR: Bureau for Children and Families
The Office of Social Services; Office of Head Start State
Collaboration; and Division of Early Care and Education all act as
liaisons to early care & education programs and serves on
working committees with the Office of Maternal, Child and Family
Health.
WV Chapter of the American Academy of Pediatrics
The WV Chapter of the AAP provides professional technical
assistance and a link to national project coordination efforts
through the national AAP office. It also convenes a child care
committee that focuses on issues related to the pediatrician's role
in child care. Several of its members serve as child care health
consultants.
Partners Implementing an Early Care & Education System for
West Virginia (PIECES)
PIECES coordinates early child care and education programs
though out the state. It is their goal to establish access for all
West Virginian children to high quality health and education
programs. This will in return provide a foundation for academic
success with maintained support for working parents.
Section II: Genetic Disease and the State’s Role
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What is the Family and Physician’s Responsibility, once a
Diagnosis of a Genetic Disease is made? One of the most important
things a family can do for themselves when a member is diagnosed
with a genetic or acquired chronic condition is to educate them
about the disease, its medical and financial implications and set
in motion a plan to meet those needs. If the client is a child it
is important that all services are identified to support the family
financially, emotionally and psychologically. Careful planning must
be done to provide for the child in his/her adults years. If the
client is an adult careful attention must be paid to income
maintenance as well as to family issues occur when a once healthy
adult is diagnosed with a chronic, oftentimes life threatening
condition. Any professional/non-profit health agency working with a
client/family in this situation owes it to them to inform them of
what they should do to address obtaining medically necessary care,
income maintenance as well as the emotional and psychological
impact on the family.
What has West Virginia done to address the issue of genetic
disease?
Our mission is to screen all infants born in the State of West
Virginia for phenylketonuria, hypothyroidism, galactosemia and
hemoglobinopathies as mandated by state law.
Agencies served: Office of Maternal, Child and Family Health
(OMCFH), birthing facilities, physicians, clinics, and County
Health Departments.
SPECIMEN
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Dried blood spot specimen collected on FDA approved filter paper
provided by the Office of Laboratory Services. Blood spot specimen
should be taken from a heel puncture and applied directly to filter
paper portion of collection form. Alternate approved site for
specimen collection is the dorsal/hand vein. Allow bloodspot to dry
3-4 hours before mailing. Specimen should be collected prior to
discharge from birthing center and no later than 7 days of age and
mailed to OLS within 24 hours after collection.
FORMS AND INSTRUCTIONS
Specimen Collection Instructions
Specimen Collecton Kit Order Form
Specimen Collection Training Video Order Form
RESOURCE LINKS
Mid-Atlantic Region Guide
Office of Maternal,Child and Family Health (OMCFH)
The National Taskforce for Newborn Screening and Genetic
Resources Center (NNSGRC)
CONTACT INFORMATION
Newborn Screening Section Ph. 304-558-3530 Fx. 304-558-6210
Barbara Eckerd Supervisor [email protected] 304-558-3530
x2510
Ruth Woody Chemist II 304-558-3530 x2501
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Maria Yoakum Chemist II 304-558-3530 x2501
Phaedra Burke Chemist II 304-558-3530 x2501
Debbie Taylor Office Assistant II 304-558-3530 x2501
Residents should seek supplemental screening for the diseases
not included in the state screening.
General Information
West Virginia began screening universally for hemoglobinopathies
in July, 2003.
Newborn Screening Advisory Committee Yes, West Virginia has a
Newborn Screening Advisory Committee. West Virginia NBSAC
Chairperson Kathy Cummons, Chairperson WV Office of Maternal, Child
and Family Health
NBSAC Meeting Dates Meetings held quarterly. Contact Barbara
Eckerd for additional meeting information.
Location of Meetings: 350 Capitol Street 4th floor conference
room Charleston, West Virginia
For More Information
• West Virginia Newborn Screening Program Website • West
Virginia Newborn Screening Lab • West Virginia Genetics Project •
Family Village Community Center
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If you have any updates, changes, or new information to be added
to this page, please report this information to
[email protected].
HOME | ABOUT US | PRESS RELEASES | DONATE NOW | VOLUNTEER
NOW
Contact Save Babies Through Screening for questions about the
content of this site or the Webmaster for questions about technical
issues related to this site.
Terms of use for this site.
Where can a family go for genetic evaluation?
Department of Pediatrics
Genetics Marybeth Hummel, MD Associate Professor University of
South Florida
West Virginia Genetics Evaluation and Counseling Center The West
Virginia University Genetics Center is based at the Robert C. Byrd
Health Sciences Center at WVU in Morgantown, WV.
Aim To serve West Virginia and surrounding areas by providing
genetic services and to act as a resource agency for health
professionals.
Who Would Benefit?
• Families of children with birth defects. • Persons with
questions about genetic or familial diseases. • Couples with
fertility problems such as repeated miscarriages. • Individuals
concerned about a family history of mental retardation. • Anyone
seeking information with regard to a genetic or possible genetic
condition.
Services:
1. Evaluation, Diagnosis and Treatment of birth defects and
inherited conditions.
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2. Diagnosis, Treatment and Management of metabolic
diseases-such as phenylketonuria (PKU), galactosemia and other
metabolic diseases.
3. Genetic Counseling for families with a diagnosed genetic
disease. 4. Cancer Genetics counseling and coordination of testing
for familial cancer. 5. Assessment of the cause, pattern and
recurrence risk for disease conditions. 6. Prenatal Diagnosis of
birth defects, chromosomal abnormalities and
genetic diseases early in pregnancy. 7. Education of individuals
and families about genetic conditions. 8. Laboratory Analysis to
establish or confirm genetic diagnoses. 9. Comprehensive Follow-up
with referrals to community agencies. 10. Outreach Community
Educational Programs regarding genetics.
Locations of Clinics:
1. Morgantown [WVU Physician Office Center] 2. Charleston [Women
and Children's Hospital] 3. Huntington [Marshall University -
University Children's Medical Center] 4. Parkersburg [St. Joseph's
Hospital] 5. Wheeling [Wheeling Hospital] 6. Martinsburg
STAFF
• The Medical Genetics Staff includes: Marybeth Hummel, M.D.
Director, Medical Geneticist with board certification in Clinical
Genetics and Pediatrics
• Chris Bonfili, M.A. Genetic Counselor • Sherry Graham, R.N.,
M.S.N., M.S. Genetic Nurse Specialist • Robert Harding, M.S., R.D.,
L.D. Dietitian • Cytogenetic Technologists
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• Administrative Staff
A variety of other specialists are available on a consultation
basis.
Prenatal services are coordinated with Maternal-Fetal Medicine -
Department of Obstetrics and Gynecology.
Contact For further information or an appointment at any clinic
site contact: WV Genetics Center Department of Pediatrics Robert C.
Byrd Health Sciences Center at WVU Morgantown, WV 26506-9214
Phone: 304-293-7332 Toll-Free 1-800-842-3627
Payment: All insurances, Medicaid and Medicare are accepted. Any
payment concerns or questions contact the Center.
Supported by: West Virginia University School of Medicine West
Virginia Bureau of Public Health Office of Maternal & Child
Health
Genetics & IVF Institute
Division of Pediatric Genetics
William Wilson, M.D.
The Division of Medical Genetics provides genetics services to
both children and adults. Our physicians are Board-certified by the
American Board of Medical Genetics and the American Board of
Pediatrics. Our Genetic Counselors are certified by the American
Board of Genetic Counseling. Through clinics at the University
Hospital and at satellite clinic locations in Virginia and West
Virginia, as well as in-patient consultations, we offer diagnostic
services, genetic counseling, and management recommendations for a
variety of genetic conditions.
Faculty Members Special Services Susan Blanton, Ph.D. Wendy
Golden, Ph.D. Barbara Goodin, MS RD Thaddeus Kelly, M.D., Ph.D.
Our Cytogenetics Laboratory offers diagnostic cytogenetic
testing, including chromosome analysis and fluorescent in-situ
hybridization studies. We also offer
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Patricia Allinson, M.S. Shawn Lipinski, M.Sc. Danielle Dong, Sc.
M.
biochemical and molecular testing through the Biochemical
Genetics Laboratory and Molecular Diagnostics Laboratory, as well
as a wide range of specialized tests provided by reference
laboratories.
Metabolic Diseases Program
The Division of Medical Genetics serves as a referral and
treatment center for the state Newborn Screening Program covering
the western portion of the Commonwealth of Virginia. Abnormal test
results for various diseases are communicated to the Metabolic
Diseases Program, enabling the medical staff to provide follow-up
and treatment to children with inborn errors of metabolism and
their families. Our patient population includes children and adults
with PKU, HCU, MSUD, Urea Cycle Disorders, MCADD, Galactosemia, and
Biotinidase Deficiency. Referrals can be made by calling the
Division of Medical Genetics at (434) 924-2665 and asking for Dr.
William Wilson, program director, or Barbara Goodin, MS, RD,
program nutritionist.
Clinics are held at the University Hospital in Charlottesville,
and at satellite locations in Lynchburg, Roanoke, Abingdon,
Winchester, and Beckley (WV). To make an appointment, call
(434)-924-2665
Pediatrics
Electronic Consultations
PO Box 800386
Charlottesville, VA 22908
434-924-9130
Testing Centers Department of Medical & Molecular
Genetics
34
http://www.healthsystem.virginia.edu/people/dop/dopDetail.cfm?drid=532http://www.healthsystem.virginia.edu/people/dop/dopDetail.cfm?drid=1410http://www.healthsystem.virginia.edu/people/dop/dopDetail.cfm?drid=1509http://staging.healthsystem.virginia.edu/internet/pediatrics/patients/Tutorials/EmailConsultations.cfmhttp://www.virginia.edu/wlcm.htmlhttp://www.iupui.edu/~medgen/hereditary/testing_centers.htmlhttp://www.iupui.edu/~medgen/hereditary/testing_centers.htmlhttp://www.givf.com/menuv.cfm
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Fairfax, Virginia Facilities ( Recent change: Old Exit 8 off of
I 495 is now Exit 50 for Arlington Blvd. Rt 50)
Ashburn, Virginia Facilities
Gaithersburg, Maryland Facility
National Organization for Rare Disorders, Inc. NORD (CompuServe)
Voice: (800) 999-6673
National Health Information Center (NHIC)
Parents Helping Parents
Genetic Alliance Voice: (800) 336-4363
Mid-Atlantic Regional Human Genetics Network E-mail:
[email protected]
The Center for Human and Molecular Genetics (CHMG) (genetic
information and resources web site sponsored by UMDNJ/NJ Medical
School)
West Virginia Early Hearing Detection & Intervention (EHDI)
Information
State Profile | Newborn Hearing Screening | Diagnostic Audiology
| Early Intervention | Data Management | Medical Home | Program
Evaluation | Family Support
West Virginia For Health Care Providers | For Families
Early Hearing Detection & Intervention Contact: Patricia
Moss Director
35
http://maps.yahoo.com/py/maps.py?Pyt=Tmap&YY=11413&addr=3020%20Javier%20Road&city=Fairfax&state=VA&slt=38.8678&sln=-77.2350&zip=22031&mag=9&cs=9&newmag=8http://maps.yahoo.com/py/maps.py?Pyt=Tmap&addr=20925+Professional+Plaza&city=Ashburn&state=VA&slt=39.038200&sln=-77.504600&name=Ashburn+Virginia+Facility&zip=20147-3403&country=us&BFKey=&BFCat=&BFClient=&mag=8&desc=&cs=9&newmag=7&poititle=&poi=http://maps.yahoo.com/py/maps.py?Pyt=Tmap&addr=902+Wind+River+Lane&csz=Gaithersburg%2C+MD+20878&Get%A0Map=Get+Maphttp://www.health.gov/nhic/http://www.php.com/http://www.mannosidosis.org/alliance/http://www.pitt.edu/~marhgn/mailto:[email protected]://www.genesatwork.org/http://www.infanthearing.org/states/westvirginia/http://www.infanthearing.org/states/westvirginia/#providershttp://www.infanthearing.org/states/westvirginia/#family
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Office of Maternal & Child Health WV Dept. of Health &
Human Services 1411 Virginia Street East Charleston, WV 25301
Phone: 304-558-5388 Fax: 304-558-2183 E-mail:
[email protected]
Newborn Hearing Screening
Universal Newborn Hearing Screening Programs • West Virginia
UNHS Hospitals • West Virginia UNHS Statistics
UNHS Legislation • West Virginia UNHS Legislation • Rules &
Regulations (12kb) • West Virginia UNHS Legislation - Summary
Also see: • General Newborn Hearing Screening »
Section III Health and Disability Advocacy Resources
West Virginia Resources
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mailto:[email protected]://www.infanthearing.org/unhsprograms/westvirginia.htmlhttp://www.infanthearing.org/status/unhsstate.htmlhttp://www.legis.state.wv.us/scripts/as_web.exe?98hbills+D+63021http://www.infanthearing.org/legislative/documents/rr_westvirginia.pdfhttp://www.infanthearing.org/legislative/summary/westvirginia.htmlhttp://www.infanthearing.org/screening/index.htmlhttp://www.wvcaregivers.org/onlineresources/resources.html
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2004 Disability Caucus
The West Virginia Statewide Independent Living Council began the
West Virginia Disability Caucus in 1997 as an effort to support and
develop the statewide, grassroots disability community.
The Disability Caucus provides training in grassroots organizing
and advocacy skills for people with disabilities and other
interested individuals. The Caucus also provides motivation for
individuals with disabilities to get involved, to feel ownership,
and to take responsibility for making changes to improve the lives
of people with disabilities in their community, state and nation.
The Caucus is a good opportunity for people with disabilities to
network, begin developing strategies, and connect with advocacy
groups they can be part of to actually go about the work of making
change.
The Caucus has been held in 1997, 1998 and 2000 and attendance
has grown each year. High quality state and national speakers are a
highlight of the Caucus. Individuals also have the opportunity to
attend District Meetings at each Caucus to identify issues, develop
strategies, and establish priorities for addressing the problems of
individuals with disabilities in their area of the state. The
reports from the District Meetings are used by the Council, and by
other statewide disability groups, as they plan services, future
advocacy activities, and legislative priorities.
West Virginia Yellow Pages for Kids with Disabilities Your
Yellow Pages l Build Your Team l Get Educated l Join a Parent Group
l Find Legal & Advocacy Help l For
New Parents l Get Listed in the Yellow Pages l Help Others -
Yellow Page Flyers
Select a State . . .
At the Yellow Pages for Kids with Disabilities, you will find
educational consultants, psychologists, diagnosticians, health care
specialists, academic tutors, speech language
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therapists, advocates, and attorneys. You will also find
government programs, grassroots organizations, special education
schools, and parent support groups.
Build Your Team Establish a relationship with a child
psychologist, educational diagnostician or educational consultant
who can advise you about appropriate goals and objectives for your
child.
How Can I Find an Evaluator? Tutor? Advocate? Attorney Working
with Independent Evaluators and Educational Consultants What to
Expect from an Evaluation of Your Child
Join a Parent Group
When you join a parent group, you will meet other parents who
have traveled down the same road. Learn from them. They will help
you learn the "rules of the game." To find the right group for you,
read Strategies to Find a Support or Study Group Find Legal &
Advocacy Help
If you have a dispute with the school about your child's special
education program, you may decide to consult with an attorney or an
advocate who is familiar with special education law.
Read How to Find an Educational Consultant, Advocate, Attorney.
You will find listings of advocates and attorneys in your State
Yellow Pages. Also check our Directory of Legal and Advocacy
Resources.
If you decide to get help from a third party, these guidelines
by attorney Jennifer Bollero will help you evaluate the people you
interview.
Before You Hire a Lay Advocate Before You Hire an Attorney If
You Are a "New Parent" . . . If you are a "new parent," you are
likely to feel confused and overwhelmed. Read
Advocating for Your Child - Getting Started and the Wrightslaw
Game Plan for New Parents. If you need immediate help, read Crisis!
Emergency! Help! by Pete and Pam Wright.
Get Listed in the Yellow Pages If you help parents and
caregivers get services for children with disabilities (i.e.,
an
38
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evaluator, educational consultant, academic tutor, advocate,
attorney, special ed school, etc.) or you facilitate a support or
study group, please submit an application be listed in the Yellow
Pages for Kids. Listings are free.
LDA of West Virginia Visit us on the internet at
http://www.WVLDA.org
--Select Local LDA of West Virgina Chapter:
LDA of West Virgina (WV000)
The West Virginia Learning Disabilities Association Inc., WVLDA
Inc., is a statewide nonprofit organization of parents,
professionals, and adults dedicated to enhancing the quality of
life for individuals with learning disabilities, and is affiliated
with the Learning Disabilities Association of America.
What are WVLDA's Goals?
• WVLDA seeks to educate individuals with learning disabilities
and their parents about the nature of the disability and inform
them of their rights.
• WVLDA encourages research in neuro-physiological and
psychological aspects of learning disabilities.
• WVLDA strives to create a climate of public awareness and
acceptance. • WVLDA works to improve regular and special education
through advocacy with
the U.S. Department of Education and the State Departments of
Education. • WVLDA develops and promotes legislative assistance. •
WVLDA disseminates information widely. • WVLDA provides advocacy
information and training. • WVLDA works to establish career
opportunities. • WVLDA promotes education and training on learning
disabilities for special
education and regular education teachers.
Virginia Non-Profit Organizations
39
http://www.yellowpagesforkids.com/help/states.htmhttp://www.wvlda.org/http://west-virginia.uscity.net/Organizations/
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#2 Players Club Drive
Suite 104 Charleston, WV 2
Disability-Specific Organizations
Attention Deficit Disorder Barbara O'Donnell, Branch Coordinator
West Virginia CHADD Monongalia County Satellite 24 Heather Drive
Morgantown, WV 26505 (304) 364-5305 (in WV) Web:
www.citynet.net/wvchadd/index.htm Autism Dr. Barbara
Becker-Cottrill, Director West Virginia Autism Training Center
Marshall University One John Marshall Drive Huntington, WV
25755-2430 (304) 696-2332; (800) 344-5115 (in WV) Web:
www.marshall.edu/coe/atc Blind/Visual Impairments Frances Mary
D'Andrea, Director American Foundation for the Blind-National
Literacy Center 100 Peachtree Street, Suite 620 Atlanta, GA 30303
(404) 525-2303 E-mail: [email protected] Web: www.afb.org Brain
Injury Peggy Brown, Executive Director Brain Injury Association of
West Virginia, Inc. P.O. Box 574 Institute, WV 25112 (304)
766-4892; (800) 356-6443 (in WV) E-mail: [email protected] Web:
www.BIAUSA.org/WVirginia Learning Disabilities Lori Dubrawka,
President Learning Disabilities Association of West Virginia
40
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1003 Highland Road Charleston, WV 25302 (866) 985-3211 (in WV)
E-mail: [email protected] Mental Health Ellen Ward, Executive
Director Mental Health Association in the Greater Kanawha Valley,
Inc. One United Way Square Charleston, WV 25301-1098 (304) 340-3512
E-mail: [email protected] Web: http://mha-kanawha.org Michael Ross,
Executive Director NAMI WV P.O. Box 2706 Charleston, WV 25330-2706
(304) 342-0497 E-mail: [email protected] Web: http://namiwv.org Teri
Toothman, Executive D