Health Information Center

Change is in the Wind Q & A Document from Family to Family

The Arc of Illinois Family to Family Health Information and Education Center

708-560-6703 (voice) 866-931-1110(toll free for Illinois families)

Change is in the Wind March 12, 2008

Seminar on Medicaid for Children and Youth with Special Health Care Needs Audience Questions answered by seminar speakers.

Division of Specialized Care for Children:

Core Program

a. Whattypeofmedicalconditionsimpedingspeechwouldbe considered eligible? The condition must meet the definition of a DSCC eligible category, impair the child, and be amenable to treatment. Examples are cleft lip and palate as an external body impairment and cerebral palsy as a neurological impairment.

b. HowdoesaproviderbecomeaDSCCprovider?

The provider calls their regional DSCC office and asks to talk to a care coordinator or Program Services Manager.

c. IsthereawaitinglistatthistimeforyourDSCCprogram?

No DSCC has never had a waiting list.

d. Ifachildhasautismandepilepsy-isdyspraxiaorapraxia covered? Each child’s medical reports are reviewed individually. We would review the neurologist’s diagnosis and treatment plan along with the speech pathology report to determine their medical eligibility.

e. CanachildservedundertheChildren’sSupportwaiver(DD) qualify for (DSCC Core) services? Yes, as the DSCC Core program is not a Waiver.

f. What are your income requirements for your program?

For DSCC to pay for services the family income must be below 285% of the poverty level. For a family of 4 this is $60,420. All families are eligible for care coordination, regardless of income.


g. ArefamilieseligibleforDSCCandtheHCBSwaiver concurrently? Yes, if the child has a medically eligible condition.

h. Forspeechissues-isthediagnosisofapraxiaordyspraxia eligible? DSCC would review the physician’s diagnosis and treatment plan along with the speech pathologist’s report. Based on that information a decision is made.

Home Care Program

a. Are families with a child with a G-tube still going to be eligible for the Home Care Program? Will they be deemed ineligible at review? This would depend upon the other medical care needs of the child. Each situation has something unique about it that influences the decisions made and one decision cannot be considered the rule.

b. Pleaseexpandon“medicallyfragile”?

“Medically fragile” is hard to define. It could be children, who are medically unstable, required numerous admissions, have vital signs and medications that change and need medical intervention. In the future, Medicaid will be using an objective scoring tool that will help identify children that are “medically fragile”.

c. Is medical daycare not available in IL because there are not facilities to provide this service or because DHS or Medicaid would not approve it?

There are currently no medical daycare facilities because no one or no agency has obtained approval. Medically supervised daycare is a waiver service.

Doral Dental of Illinois:

a. Can a dental provider apply to be part of this?

Yes! If a provider is licensed (in Illinois or in any other state), he or she can enroll as a participating provider in the HFS Dental Program. Interested dental providers may call one of Doral’s IL Provider Representatives to receive additional information, to ask questions about the program, or to receive assistance with the enrollmentprocess. Doral’sILProviderRepresentativesare:

NickBarnette800.710.2629 KellyPulliam 866.585.2920

b. If we are under care of a specialist not enrolled with Doral, can they still submit a claim?


No. In order to submit claims and receive payment for covered services, dental providers must be enrolled in the HFS Dental Program. Please encourage your dental provider to enroll in the program. If your dental provider has questions about the program, please encourage him/her to contact one of Doral’s IL Provider Representatives (listed above).

Automated Health Systems: Illinois Health Connect



Whatifemergencyroomhasbeenusedasmedicalhome? Where is the family assigned? All clients receive 60 days to make an active choice for a PCP/medical home. During that choice period, the client receives a minimum of 3 letters (2 enrollment notices and 1 reminder notice) and 2 phone calls explaining the client’s choices and encouraging an active choice. If the client does not make an active choice, then claims data is used to select the most likely PCP (must be a provider type that is enrolled as an Illinois Health Connect PCP), for the client. If there are no claims that link the client to an available PCP, then the process takes into account the PCP of other family members, a provider’s specialty, a provider’s capacity limits and location when assigning a client to a PCP that did not make an active choice.

If you have Medicaid and received a packet to enroll and called to enroll, is it correct that you were told you are not eligible? Initially some families with waivers were not correctly identified in the Illinois Health Connect system and families did receive initial enrollment packets. If you followed up by phone call and were told that you don’t need to enroll, then you are not eligible for Illinois Health Connect at this time. If you have any questions about whether or not you are eligible for Illinois Health Connect, you can call the Call Center at 1 -877-912-1999 (TTY: 1 -866-565-8577). The call is free.

c. Why do you receive the paperwork to enroll if not eligible?

Initially some families with waivers were not correctly identified in the Illinois Health Connect system, so enrollment materials were mailed in error. However, it is important to note that a client’s eligibility to participate in Illinois Health Connect may change during the choice period. A client may initially be eligible to participate in Illinois Health Connect, but due to a change in the clients case status (for example, a client obtains good private insurance in addition to the HFS medical card) a client may no longer be eligible to participate. Illinois Health Connect may ha ve sent an enrollment


packet to the client as the client was eligible at that time, but due to a change in case status is no longer eligible to participate in Illinois Health Connect. If a client is no longer eligible for Illinois Health Connect, but calls the Illinois Health Connect client helpline because they received a notice, the Illinois Health Connect Customer Service Representative will explain to the client the reason that they are no longer required to participate in Illinois Health Connect.

d. How does PCCM differ from FCM (family case management?)

In Family Case Management, the caseworker establishes a one-to- one relationship with the family.

Primary Care Case Management refers to a health care delivery system where clients are “connected” to a medical home or PCP that will establish a relationship with the family.

e. Are PCPs oriented about this policy of PCCM?

Yes. Illinois Health Connect has conducted and will continue to conduct extensive provider trainings all over the state educating physicians, clinics, nurse practitioners, health departments, specialists and community groups about Illinois Health Connect. Illinois Health Connect has also collaborated extensively with the Illinois Academy of Family Physicians and the Illinois Chapter of the American Academy of Pediatrics. Their monthly newsletters regularly contain updates about Illinois Health Connect.

Currently there are over 5,200 medical homes enrolled in Illinois Health Connect. All medical homes receive a monthly mailing with updates about the program and quarterly newsletters. In addition, Illinois Health Connect Provider Services Representatives go out into the field and visit with providers in their offices. The Provider Service Representatives typically make over 200 visits to physicians each week.

f. Why are certain populations (SSI recipients, Native Americans etc.) excluded from Illinois Health Connect? Eligibility for Illinois Health Connect was determined by HFS in accordance with federal requirements. These requirements prohibit the mandatory enrollment of certain populations. Other populations were excluded because they already had a case manager or primary care physician through a different program, or because they are eligible under a program that offers limited medical coverage.

Here is some detailed information regarding the “excluded populations” from the Illinois Health Connect website:

4 pdf

Who CANNOT Join Illinois Health Connect? • People who have Medicare • Children under age 21 who get Supplemental Security Income (SSI) • Children in foster care and children who get Subsidized Guardianship or Adoption Assistance from DCFS (Department of Children and Family Services) • Children under age 21 who are blind or who have a disability • People who reside in nursing facilities • American Indians and Alaska Natives • People with Spend-down • Refugees • People who get Home and Community-Based services like the Community Care Program, the Home Services Program, or community services for persons with developmental disabilities • People residing in Community Integrated Living Arrangements (CILAs) • People in Presumptive Eligibility programs • People enrolled in the following programs with limited benefits: _ Illinois Healthy Women _ All Kids Rebate, FamilyCare Rebate _ Illinois Cares Rx, formerly SeniorCare/Circuit Breaker _ Transitional Assistance, age 19 and older _ Emergency Medical Only _ Hospice _ Sexual Assault, Renal and Hemophilia Programs Populations Already Managed: _ High Level Third Party Liability (TPL)/Private Insurance _ Program for All-Inclusive Care for the Elderly (PACE) participants _ Children under age 21 whose care is managed by the Division of Specialized Care for Children (DSCC) of the University of Illinois at Chicago.

g. Does the IL Health Connect program reimburse PCPs for care coordination, team consultation for planning, extended visit to provide care coordination to improve quality of care provided through a medical home? These services are not usually reimbursed through HFS/Medicaid programs?

The Illinois Health Connect program does give additional reimbursement to providers for coordinating care for patients that have selected the provider for their medical home. This care management fee is paid per member per month and is $2.00 per child, $3.00 per adult or $4.00 per disabled or elderly enrollee. There is not a separate reimbursable code for “care planning”.


h. Do families of children with IEPs in IL Health Connect get instructions to give to their PCPs regarding letters, forms and reports required by the school? Illinois Health Connect does try to assist families with coordinating all aspects of their health care. Illinois Health Connect does not have a specific program for families with children with an IEP.

i. Why do some counties have HHSIL Client Enrollment brokers and not others? The Illinois Client Enrollment Broker assists clients who live in voluntary managed care counties where there is a choice to establish a medical home through a managed care organization (Harmony Health Plan or Family Health Network) in addition to Illinois Health Connect. The Illinois Client Enrollment Broker provides unbiased education to clients about all of their possible health plan choices and assists clients in enrolling with a health plan, or changing between health plans.

j. Does IL Health Connect have child psychiatrists and developmental pediatricians enrolled as providers? Specialists do not have to “enroll” with Illinois Health Connect to continue to provide services. If a specialist appears to be the most appropriate medical home provider, the specialist can enroll as a PCP. Illinois Health Connect will assist families in locating specialty services, including psychiatry and developmental pediatricians if the client has been referred by their PCP.

Illinois Department of Human Services, Division of Developmental Disabilities:

a. How are waiver decisions made for the 600 children as to who gets the waiver? Since there are so much more children needing service than 600, how is determination made? This issue is addressed in a memorandum dated January 4, 2008. Additional correspondence may be expected in April, 2008. To view the January 4th memo click on link: Announcement.pdf

Here are the April 2008 memoranda:

and emergency criteria for children: %20Final%20Draft%204-10%20Children.rtf


b. Is this benefit maintained for the child until adulthood?

See above.

c. If autism and developmental delay are not covered by DSCC, then whom is managing the new DD/autism waiver? The Division of Developmental Disabilities (within the Department of Human Services (DHS)) in cooperation with the Department of Healthcare and Family Services (HFS) (the single state Medical agency) manages the new DD Children’s Waivers.

d. Do you have to apply for Medicaid at 18 or 21 if you are in the Children’s Support Waiver?

To be in the Children’s Support Waiver (CSW), all children and young adults must be eligible for Medicaid. The family typically receives the CSW award letter and then applies for All Kids under special eligibility rules (for children and young adults through age 18). Upon turning age 19, young adults must apply for the Aged, Blind and Disabled (AABD) Medical Assistance program. Some children are already Medicaid- eligible when they apply for CSW (depending on their family income). Regardless of age, a child cannot be in a Medicaid Waiver if he or she is not Medicaid-eligible.

e. In general, how do the Children’s Waiver programs provide funding- is it a “fee for service” model, or a “set amount” base on number of children receiving services?

The Children’s Support Waiver (CSW) is operated using a fee-for- service service delivery model. Services are provided and billed, as specified in the child’s Individual Service Plan (ISP) up to a monthly service cost maximum. Some rates are set by the state and other rates are negotiated by the program participant and/or their family/representative with help from the local Service Facilitator. The Department budgets for this program based on the average spending for participants in the program.

Children in the Home-Based Support Services Program have access to funding up to two times SSI each month. This year that amount is $1,274. Families work with a service facilitator who helps they design a package of supports and services that are meaningful to that child and his family. Providers of those supports and services are reimbursed by the State at the end of the month.

For more information about the program please see the “Frequently Asked Questions” document on the homepage of the Family Support Network

f. Under the CHBW will Medicaid cover night nursing and NCPS?


Medical services, such as nursing and NCPS, are provided by the Medicaid program, not the CSW (also referred to as the Children’s Home-Based Support Program/CHBS). Children can use their medical card to access State Plan services that are administered by the Dept. of Healthcare and Family Services (HFS).

g. What models (in other states) has DHS looked at when structuring the DD waiver?

DHS convened an Ad Hoc Waiver Advisory Committee of our Statewide Advisory Council to get input from consumers, providers and other advocates for the new waivers being developed or renewed. The group met for over one year prior to the submission of the waiver applications. Information from numerous states was gathered and shared with committee participants, including behavior programs from Wisconsin and Maryland .

h. How does a parent access the unpaid caregiver training benefit?

Unpaid caregiver training is one of the covered HBS services in the Children’s Support Waiver (CSW). All desired services are included in the Individual’s Service Plan. Participants should contact their HBS Service Facilitator to discuss this new service and how to include it in their service plan. Like any waiver service, the provider must be qualified and enroll with the Division of DD as a Medicaid Waiver provider prior to the provision of services. A HBS Service Agreement form needs to be signed by all parties stating the terms of the service to be provided, including the rate to be paid and amount of services to provided.

I. Can someone at the age of 18 apply for the CSW and not the adult waiver? The CSW covers children and young adults between the ages of 3 and 22. Someone who is 18 can apply for the CSW or the Adult Waiver as, based on their age, they are technically eligible for both waivers.

j. Why do adults, 18 and over, have to apply for SSI to get Medicaid? Medicaid for adults is provided based on what is called categorical need. The Medicaid program covers adults who are Aged, Blind or Disabled (AABD). SSIalso is provided to individuals with a permanent disability. Once the person’s disability status has been established by the Social Security Administration, the Medicaid program accepts this documentation and does not require a separate disability determination. If someone applying for AABD Medicaid doesn’t have SSI or SSDI there is also a separate process to determine if the person is disabled. However, most people need income as well as medical insurance and apply for both programs. Here is a link to the Social Security Administration’s SSI program information:


k. If a child is approved for Medicaid via CHBW, would that make the child eligible for DSCC program?

A child cannot be enrolled in more than one Medicaid Waiver at a time. The DSCC Home Services program is a Medicaid Waiver. So a child cannot be eligible for the Children’s Support Waiver (CHBS program) and the DSCC Medically Fragile/Technology Dependent Waiver at the same time.

However, a child can be in the Children’s DD Waiver and receive DSCC Core Services since the Core Services Program is not a Medicaid Waiver program. Remember that DSCC serves children up to age 21.A young adult, age 18-21 can be enrolled in the Adult DD waiver and still be served by the DSCC Core Program until his/her 21st birthday.

l. Is the HCBS wavier the same thing as the Katie Beckett waiver?


m. What is the waiting list/unserved eligible children for waiver program? We are not certain we fully understand the question. We suspect the answer is unknown. Information from our Prioritization of Urgency of Need for Service (PUNS) database may be helpful. A summary of the PUNS data can be found on our website at:

n. Please define “behavioral services”. Behavioral services are defined in the Waiver Provider Manual that is

posted on our website at: Children and adults are eligible to receive Behavior Intervention and Treatment Services. Provider qualifications and payment rates are in the manual. Please see the provider manual for more information. You can find more provider information in the Appendix of the Healthy Kids Provider Manual:

o. Can you define counseling for parents under the waiver?

Counseling and training for unpaid caregivers is a new Waiver service. Counselors must be qualified and must enroll as Medicaid Waiver providers before services can be delivered. Please see the Waiver Provider Manual for more specific information on this service. df

p. How does ACCESS fall into the waiver?

ACES$ is under contract with the Dept. of Human Services as a financial management service entity (also called a fiscal/employer


agent) for the DD Medicaid Waiver Home-Based Support Program. ACES$ currently processes payroll for all domestic employees providing personal support services under the Children’s Support Waiver when the family chooses to self-direct their services. Domestic employees are hired, trained and supervised by the family. ACES$ issues paychecks, conducts required background checks and withholds payroll taxes in compliance with state and federal law.

Here is contact information for ACES$:$%20Contact%20 Info.pdf

q. How do families use the training and counseling services?

Please see question #o on counseling. Training can cover the cost of attending seminars and other informational programs directly related to providing care for the child with a disability. Travel and meals associated with attending training are not covered. All qualified providers must enroll as Waiver providers and all services must be included in the child’s Individual Service Plan (ISP). Please see the Waiver Provider Manual for more information.

r. Do waivers cover ST/assistive technology communicator for patients with brain injury or autism? Speech Therapy is not a covered DD Waiver service for children. Children who need ST can access this service through the All Kids/Medicaid program. Children e nrolled in the DD Waiver must be eligible for Medicaid. Therefore, all children in the Waiver have access to ST through the Medicaid program.

See the Healthy Kids Provider Manual and Appendix for more information:

Assistive technology (AT) is a covered Waiver service for children in the DD Waiver. Funding of $15,000 over a five-year period is available. This funding is in addition to the monthly service cost allocation. AT is available for any child in the waiver who needs AT services and is not limited to children with brain injury or autism. The waiver is for children with developmental disabilities and includes a range of diagnosis including autism spectrum disorders and certain brain injuries.

s. With only 700 slots for the waiver program available each year for the entire state, is the list reviewed periodically to determine who has the greatest need?

The DD Children’s Support Waiver was approved for a capacity of 600 children this year. The State is in the process of amending the


waiver to increase the capacity due to funding provided by Hospital Tax revenue appropriated for DD waiver program expansion.

t. Does the list remain the same from year to year- once on the list, do you stay on it or need to re-apply each year?

Once a child in enrolled in the waiver, he or she remains on the waiver as long as he or she is eligible. The PUNS database is updated annually by the Independent Service Coordination (ISC) agencies under contract with the Division of DD. If a family moves, they sho uld contact the ISC agency with their new address and other contact information.

u. If a family has private health insurance and has a child who qualifies for the home-based waiver, how can they use All Kids?

For children who are eligible for both private health insurance and All Kids/Medicaid, Medicaid can be billed for items and services not covered by the private insurance plan. Insurance plans vary greatly.

v. If a child on waiver qualifies for Medicaid, do they have to pick a provider through All Kids?

At this time, children in the DD Children’s Support Waiver are exempt from the Illinois Health Connect program and do not have to designate a “Medical Home” or primary health care provider.

w. How do we get a center paid for clients who have Medicaid and children’s waiver? Many centers/clinics will not accept it because they are not getting paid.

Qualified providers of Children’s Support Waiver services must enroll with the Dept. of Human Services as a Medicaid Waiver provider. Here is a link to provider enrollment forms and information:

All Waiver services must be included in the child’s Individual Service Plan (ISP). A HBS Service Agreement must be signed with each provider that states the terms of the service(s) to be provided. Please contact the child’s local HBS Service Facilitator (waiver case manager) to find out more about covered services, provider qualifications and other waiver information. For more information on the waiver, see the Waiver Provider Manual posted on our website at:

For questions about All Kids/Medicaid, please contact the Dept. of Healthcare and Family Services:

x. Most centers will not accept Medicaid for families who normally would not receive the medical ‘card”. Centers are not being paid or barely paid.The families cannot use these services even though they are eligible.


Individuals who are experiencing difficulties in accessing needed services should contact their service facilitator or ISSA for assistance.

y. Under ACCESS- how can the “training” funds be used for the families? Please refer to question #p. Training funds are not reimbursed by ACES$. ACES$ is the State’s fiscal/employer agent for domestic employees hired by the participant and/or his or her family. They issue paychecks for personal support service providers. Training bills and all other CSW bills are submitted directly to DHS by either the provider or the Service Facilitation agency. Please contact the participant’s local Service Facilitator for more information on how HBS services are authorized and billed to the Department.

z. How can the behavioral services be utilized under ACCESS?

Behavioral services are not paid through ACES$. ACES$ is the fiscal/employer agent under contract with DHS to provide payroll services for domestic employees. Depending on the specific needs of the individual, personal support workers can be made aware of and help with the behavior program in place for the individual they are serving. These personal support hours are billed through ACES$ just like any other personal support services being provided by a domestic employee hired by the individual, their family or representative. Professional behavioral services and all other HBS services are billed directly to DHS using billing software provided at no charge by the Department. All waiver providers must be enrolled and must accept the state rates as payment in full. More information is contained in the Waiver Provider Manual on our website. Or please contact the participant’s local Service Facilitator for more information.

aa. Were all of the spots (slots) filled last year?

The DD Children’s Support Waiver is new this year and was not in effect last year.

bb. $30 million- who administers this program?

Approximately $22 million in Hospital Tax Revenue funding was appropriated to the Dept. of Human Services, Division of Developmental Disabilities, who is administering the services that received funding from this special source.

cc.Which do you apply for first-: do you need to apply for and get accepted to the Children’s waiver and then be asked to apply for KidCare (sic)?

A child who is not otherwise financially eligible for All Kids/Medicaid (previously known as Kid Care) should wait to apply until they receive a Children’s Support Waiver award letter from the Division of Developmental Disabilities. Parental income is not counted when a


child who has been awarded DD Waiver funding applies for All Kids benefits. Special eligibility rules are applied for children in the CSW.

dd. Are all the waiver populations been identified? Are any slots left? The total approved program capacity is tied to the state fiscal year. Turnover in the caseload creates openings throughout the year.

ee. Is this determined through a priority population?

Please see the Waiver Provider Manual for the priority population.

ff. How many open slots are there?

The DD Children’s Support Waiver is currently approved to serve 600 children. The Waiver is in the process of being amended to increase program capacity due to additional Hospital Tax Revenue funding appropriated this fiscal year.

gg How is Service Coordinator paid? Does this come from the $1,200 monthly? In the Children’s Support Waiver (CSW) the local Service Coordinator is called the Service Facilitator. Service Facilitation is funded from the monthly allocation like all other ongoing CSW/CHBS services. Quarterly monitoring of Waiver participants by the Independent Service Coordination agency under contract with DHS is funded separately and does not come from the participant’s CHBS monthly service allocation.

hh. Who are the “independent service coordinators” who visit 4 times per year?

The Independent Service Coordinators (ISC) are Qualified Mental Retardation Professionals (QMRPs), called ISSAs, who are under contract with the Department to ensure that the service plan is being implemented and that it meet the needs of the waiver individual receiving services.Here is a link to the list of ISC agencies in Illinois:

ii. What constitutes behavior services? Are ABA and floortime included as a choice?

Applied Behavior Analysis (ABA) provided by a qualified professional is a covered service in the Children’s Support Waiver. “Floortime” can be provided if delivered by a qualified professional. Both are covered under the service “Behavior Intervention and Treatment”. Please see question # n and consult the Waiver Provider Manual found on the DHS website.


jj. Why do adults, 18 and over, have to apply for SSI to get Medicaid?

Please see question #j. (This question is a repeat.)

kk. Pertaining to the possibility of parental fees for All Kids for children with in-home waiver programs: if the child is required to have All Kids, then how can you require families to pay? Given the choice, many families would rather not pay for All Kids and use their private insurance.

The DD Children’s Support Waiver is a Medicaid program that qualifies for federal matching funds to help cover program costs. Children must be Medicaid-eligible to be in the Waiver program and for the State to receive matching funds. Matching funds are critical to the viability of the program.

The Arc of Illinois

Transition questions :

a. WhattypeofadultwithDDwouldqualifyforMedicare?

Youth with special health care needs can sometimes qualify for a different public health insurance program, Medicare, if they meet the eligibility guidelines. Here is some comprehensive information from the Healthy and Ready to Work National Center regarding Medicare coverage for youth:

What is Medicare?

Medicare is a form of national health insurance which is part of the federal government, the Health Services and Resources Administration, Center for Medicare and Medicaid Services (CMS),

Medicare covers people over age 65, certain people with disabilities of any age, some children and youth with special needs who are the children of parents who are retired, disabled, or deceased, and a few other specific diagnostic groups. People qualify if they or their spouse has 40 or more quarters (10 years) of Medicare-covered employment.

Part A: Hospital Insurance: One half of the Original Medicare Plan is known as hospital insurance. Under certain conditions, it also covers home health agency (HHA) care, hospice care, inpatient psychiatric care, blood transfusion and limited stays in nursing homes (known as skilled nursing facilities, or SNF).


Part B: Medical Insurance: Medicare Part B helps cover doctors’ services and outpatient hospital care. It also helps cover some other medical services that Part A does not cover, such as some of the services provided by physical and occupational therapists and some home health care. Part B helps pay for these services and supplies when they are medically necessary. Most people pay a monthly premium for Medicare Part B.

Part D (prescription drug benefits): Prescription drugs are now covered by Medicare. Participants must choose a prescription benefit plan in order to access this coverage. The coverage is somewhat complicated for people who have both Medicaid and Medicare health benefits. Medicare is now the “primary” coverage, and Medicaid is “secondary”.

The Arc of the United States has an online information guide: A Guide to Medicare Part D Prescription Drug Coverage for People with Developmental Disabilities” available on a new website:

The Original Medicare Plan is a fee-for-service plan that is available nationwide. With the Original Medicare Plan, you may go to any doctor, specialist, hospital, or other health care provider that accepts Medicare. Generally, a fee each time is charged for a service from a provider (set amount out-of pocket co-pays to reach deductible.) Once the deductible is satisfied, Medicare pays its share, and you pay your share (coinsurance or co-payment).

People under age 65 who have worked and receive SSDI (Social Security Disability Income) for 24 months, become eligible for Medicare after the 24th month.

What it covers: Plan pays for Hospitalization charges with charges individual with some co-pays.

May cover the cost of some services—such as home healthcare and doctors’ visits—provided in such a facility. Durable Medical Equipment (DME) Medicare Part B – Durable medical equipment (such as wheelchairs, hospital beds, oxygen, and walkers)

The beneficiary pays nothing for the Medicare-approved services and 20% of the Medicare-approved amount for durable medical equipment. What it costs: Website:


Impact for YOUTH: Under Social Security Disability Insurance (SSDI), there is a benefit to adult children with disabilities existing before age 22. When such a person’s parent becomes disabled, retires, or dies, a payment based on this parent’s earnings becomes payable to the adult child.

Adult children are required to apply for this benefit within 30 days of the parent’s disability, retirement, or death. SSDI then becomes the new primary income maintenance program for adult children who have previously participated in SSI. The SSDI payment is based on the deceased parent’s income. If the SSDI payment is low, an adult child may continue receiving a reduced SSI payment as well.

Because SSI is intended to be a program of last resort, individuals must have first applied for all other public assistance to which they may be entitled, and must apply in the future for any to which they become entitled. A person no longer covered by SSI when their primary cash benefit source is switched to SSDI cannot lose Medical Benefits (Medicaid) coverage.

LAW: The Employment for Disabled Americans Act of 1986 (Public Law 99-643) requires states to continue Medical Benefits (Medicaid)coverage when an individual who became disabled before age 22 and received SSI becomes eligible for SSDI or has an increase in SSDI benefits. Such disabled adult children continue to be considered SSI recipients for Medical Benefits (Medicaid) purposes. Disabled adult children c. 175 § 108 2(a) (3) c. 176A §8(d); c. 176B § 6(c)

You can contact Health and Disability Advocates: for more information about Medicare, Medical Benefits (Medicaid) and SSI.

More information and application forms for Medicare are available at:

Here are some additional Medicare resources:

Medicare’s Personal Plan Finder helps you narrow down your Medicare health plan choices and choose the plan that’s best for you. The tool will ask you a few questions that will help the Medicare Personal Plan Finder give you a personalized report of the health plans available in your area.

CENTER FOR MEDICARE ADVOCACY A Citizen’s Guide to Medicare


This comprehensive packet helps health insurance counselors assist patients who have been denied Medicare coverage. The guide includes 4 sections: hospital care, home health care, skilled nursing facility care, and Medicare. To order call: 1-800-262-4414 or 860-456- 7790

b. Doesaparent’sprivatehealthinsurancehavetocontinueto cover a child/adult with disabilities? (Assume this means a Disabled Adult Child)? Until what age?

Here is the Illinois law with covers which youth may be able to remain on a parent’s health insurance: This is what Illinois’ law says: 215 ILCS 5/356b) (from Ch. 73, par. 968b)

Sec. 356b. (a) This Section applies to the hospital and medical expense provisions of an accident or health insurance policy. (b) If a policy provides that coverage of a dependent person terminates upon attainment of the limiting

age for dependent persons specified in the policy, the attainment of such limiting age does not operate to terminate the hospital and medical coverage of a person who, because of a handicapped condition that

occurred before attainment of the limiting age, is incapable of self- sustaining employment and is dependent on his or her parents or other care providers for lifetime care and supervision.

(c) For purposes of subsection (b), “dependent on other care providers” is defined as requiring a Community Integrated Living Arrangement, group home, supervised apartment, or other residential services

licensed or certified by the Department of Human Services (as successor to the Department of Mental Health and Developmental Disabilities), the Department of Public Health, or the Department of Public Aid.

(d) The insurer may inquire of the policyholder 2 months prior to attainment by a dependent of the limiting age set forth in the policy, or at any reasonable time thereafter, whether such dependent is in fact a disabled

and dependent person and, in the absence of proof submitted within 60 days of such inquiry that such dependent is a disabled and dependent person may terminate coverage of such person at or after

attainment of the limiting age. In the absence of such inquiry, coverage of any disabled and dependent


person shall continue through the term of such policy or any extension or renewal thereof. (e) This amendatory Act of 1969 is applicable to policies issued or renewed more than 60 days after the effective date of this amendatory Act of 1969.(Source: P.A. 88-309; 89-507, eff. 7-1-97.) t%2E+XX&ActID=1249&ChapAct=21 5%26nbsp%3BILCS%26nbsp%3B5%2F&ChapterID=22&ChapterNam e=INSURANCE&SectionID=52237&S

34 eqStart=107000&SeqEnd=116500&ActName=Illinois+Insurance+Code %2E

So, in addition to the disability criteria, as outlined above, the young adult must also have been enrolled in the policy prior to reaching the standard maximum age for dependent coverage status. This means, for example, that if a parent changes jobs after the young adult with DD turns 18, if the new employer offers health insurance with dependent coverage, they are not required to cover the disabled adult child.

c. Whenafamilyhasgroupinsurancethroughanemployerandhas a DD child with medical complications- what do they need to apply for so that they will have the appropriate SSI coverage for them when they are older?

At age 18, the person with developmental disabilities can become eligible for both Medical Benefits (Medicaid) (state program) and Social Security (federal program), based upon their income and assets.

Age 18 is when the state government and the federal government stop “counting” (called “deeming” in official language) the income and assets of the person’s parent/guardian. This is extremely important information. It means that your child is now an adult. Since your child is now an adult (referred to as an “adult disabled child” in legal language”), your (the parent/guardian’s) income is no longer being looked upon for important public services.

Many adults with developmental disabilities become eligible for SSI (Supplemental Security Income) for the first time when they turn 18. Many adults with developmental disabilities who get SSI can also be eligible for Medical Benefits (Medicaid) health insurance for the first time at age 18.

Additional questions:


Can we contact any/all speakers on list to come to our organization to explain in further detail the information?

Please feel free to contact our presenters regarding their availability to present to your organization. If you need more information, please contact The Arc of Illinois Family to Family Health Information and Education Center at 708-560-6703, or email us at