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 yettapearl@comcast.net

www.kidneyadvocacy.50megs.com

Inclusion does not equal endorsement

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mailto:yettapearl@comcast.nethttp://www.kidneyadvocacy.50megs.com/

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 Barbarak@mail.drs.state.wv.us

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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:Barbarak@mail.drs.state.wv.us

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.

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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

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

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http://s3abaca.ssa.gov/pro/fol/fol-home.htmlhttps://www.wvinroads.org/inroads/PGM/ASP/SC020.asp?hdn_SessionId=7527385827867041105144155&hdn_ProcessId=6

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

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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

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

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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

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

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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.

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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?

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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 barbaraeckerd@wvdhhr.org 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@savebabies.org.

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

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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: sschmidt@christianacare.org

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

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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:sschmidt@christianacare.orghttp://www.genesatwork.org/http://www.infanthearing.org/states/westvirginia/http://www.infanthearing.org/states/westvirginia/#providershttp://www.infanthearing.org/states/westvirginia/#family

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: patmoss@wvdhhr.org

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:patmoss@wvdhhr.orghttp://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

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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http://www.yellowpagesforkids.com/help/states.htmhttp://www.wvsilc.org/WEST_VIRGINIA_DISABILITY_CAUCUS_2004.htmhttp://www.yellowpagesforkids.com/help/wv.htm

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

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http://www.wrightslaw.com/info/advo.referrals.htmhttp://www.fetaweb.com/01/consultants.htmhttp://www.fetaweb.com/help/eval.expect.meyer.htmhttp://www.wrightslaw.com/archives.htmhttp://www.wrightslaw.com/info/advo.referrals.htmhttp://www.yellowpagesforkids.com/help/legal.advocacy.htmhttp://www.yellowpagesforkids.com/help/legal.advocacy.htmhttp://www.fetaweb.com/help/retain.advo.bollero.htmhttp://www.fetaweb.com/help/retain.atty.bollero.htmhttp://www.wrightslaw.com/advoc/articles/advocacy_intro.htmhttp://www.wrightslaw.com/advoc/articles/plan_new_parent.htmlhttp://www.wrightslaw.com/advoc/articles/plan_new_parent.htmlhttp://wrightslaw.com/advoc/articles/Crisis.html

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

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http://www.yellowpagesforkids.com/help/states.htmhttp://www.wvlda.org/http://west-virginia.uscity.net/Organizations/

#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: literacy@afb.net 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: BIAWV@aol.com Web: www.BIAUSA.org/WVirginia Learning Disabilities Lori Dubrawka, President Learning Disabilities Association of West Virginia

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http://www.citynet.net/wvchadd/index.htmhttp://www.marshall.edu/coe/atcmailto:literacy@afb.nethttp://www.afb.org/mailto:BIAWV@aol.comhttp://www.biausa.org/WVirginia

1003 Highland Road Charleston, WV 25302 (866) 985-3211 (in WV) E-mail: dubrawka@aol.com 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: mha@wvinter.net Web: http://mha-kanawha.org Michael Ross, Executive Director NAMI WV P.O. Box 2706 Charleston, WV 25330-2706 (304) 342-0497 E-mail: NAMIWV@aol.com Web: http://namiwv.org Teri Toothman, Executive D