Disabilities Guidebook: Specialized Care and Treatment for Children with Severe Physical Disabilities

Disabilities Guidebook: Specialized Care and Treatment for Children with Severe Physical Disabilities

Last updated: November 2006

(Chapter 3 Section 3 from Guidebook of Laws and Programs for People with Disabilities)

 

 

What It Is: The Illinois Division of Specialized Care for Children (DSCC) provides evaluation, medical care, equipment and habilitative treatment for children with certain chronic physical disabilities and health impairments. There also is a program of home services available for these children.

Where to Apply: The Division of Specialized Care for Children (DSCC)

Who May Be Eligible: Children who are residents of Illinois and who have a chronic physical impairment. The impairment must be treatable and require long-term, highly specialized medical care. There is an income test for certain services, but not others.

I. Your Legal Rights

Assistance to Evaluate the Child and to Provide Treatment or Equipment

The Type of Assistance Available
If you have a child with certain severe physical disabilities, or if you are the legally responsible adult, you can get help from the Division of Specialized Care for Children (DSCC). This is a department of the University of Illinois. Assistance can include both: (1) testing and evaluation; and (2) treatment, special equipment and habilitation services.

Any Illinois child from birth through age 21 is eligible for testing and evaluation if it is suspected that the child has one of the medical conditions eligible for coverage under the DSCC program.

If a child under age 21 has a medical condition eligible for coverage, and the family income is below the established limit, then DSCC can pay for treatment, special equipment, and habilitation services for the child.

If a child under age 21 has a medical condition eligible for coverage, but the family income is above the limit, DSCC can provide "Programmatic Assistance." This includes developing a service plan identifying the services needed by your child; assistance in locating and arranging needed services, and ongoing monitoring of the child and family needs.

DSCC does not provide payment or treatment for routine medical or dental care. It does not pay for treatment of short-term medical conditions. Also, DSCC does not pay for organ transplants, treatment which is primarily for cosmetic purposes, and experimental treatment.

Payments for services depends on whether funds are available. The University of Illinois, in its sole discretion, makes this decision. For each child, there are maximum dollar amounts for payment of authorized services per fiscal year. DSCC must provide notice of the limit to all recipients and health care facilities who may be affected.

Available Treatment Services
The child's treating physician must determine that the services provided through the DSCC Treatment Program are medically necessary. Services may include the following:

  • Consultative services through a health care professional or facility;
  • Continuing outpatient supervision, including office visits;
  • Hospitalization and inpatient medical and/or surgical treatment including special rehabilitation services;
  • Convalescent care to the extent available and required as an intermediate service to continued hospitalization;
  • Home based care intended to prevent continued hospitalization or similar-type medical placement (DSCC does not provide continuing care nursing, life
    support systems, or high technology equipment);
  • Assistive appliances, approved by DSCC, such as braces, prosthetic limbs, hearing aids, ramps, lifts and wheelchairs;
  • Speech and hearing therapy, physical and occupational therapy;
  • Nutrition evaluation, guidance and provision of special dietary substances upon medical recommendation;
  • Specialized dental care, such as orthodontia, or oral surgery for children with severe oro-craniofacial deformities (e.g., cleft lip-cleft palate);
  • Routine preventive or restorative dentistry for children for whom this service is a specific recommendation to be integrated into an authorized orthodontic or prosthodontic plan;
  • Arrangements for home follow-up services by public health and/or related habilitative services personnel;
  • Specialized prescriptive drugs integral to the treatment program of a chronic disability; and
  • Psychological/psychiatric evaluation as medically recommended for diagnosis and treatment planning.

Transportation Assistance. In order to make recommended services accessible to families, DSCC will support necessary transportation, lodging, meals, and parking costs. DSCC must provide the support only if no other sources are available for this purpose.

Note: In addition to the assistance program described here, DSCC also administers the Home and Community Based Services Waiver Program. That program helps families care for children with severe and persistent disabilities and illnesses in their own home rather than in a hospital or nursing home. It is described later in this section.

Determining Eligibility and Payment

Who Is Eligible?
The child must be a resident of Illinois. The child must have a chronic physical impairment. The impairment must be treatable requiring long-term, highly specialized medical care.

Eligible Medical Conditions
•The impairment must fall within one of the following categories:
•Orthopedic impairments (such as bone, muscle or joint disease);
•Nervous System impairments (not including cognitive or emotional disability);
•Cardiovascular impairments;
•Hearing impairments;
•Speech impairments due to a structural defect;
•Cystic Fibrosis;
•Hemophilia;
•Congenital Metabolic impairments (such as PKU or hypothyroidism);
•Eye impairments (not including incurable blindness);
•Urinary System impairments (not including renal dialysis or liver transplantation);
•External Body impairments, including defects in the skin and defects of oral or nasal structures.

Financial Eligibility/ Payment
DSCC provides certain services under the program without considering family income. These services include the following:

  • Diagnostic services to determine whether your child has an eligible medical condition; and
  • "Programmatic Assistance" (defined above).

When providing payment for your child's treatment, special equipment, and habilitation service, DSCC considers family income, as follows:

You can get financial assistance only if the family income is equal to or below the Financial Eligibility Scale. The scale is based on 285% of the federal poverty guidelines. A family is placed on the scale according to its total family income and family size.

DSCC is considered the payer of last resort. This means that you must use all other available sources of payment for the child's care before DSCC will pay for the child's treatment.

Examples: Private insurance, Medicare, and Medicaid (All Kids).

When responsible, DSCC must make full payments for authorized services in the order in which DSCC receives bills for such services. However, DSCC establishes maximum dollar amounts for payment of authorized services per child per fiscal year.

If a health care provider agrees to accept payment from DSCC, that provider cannot seek further payment from the patient or family. The provider can only seek payment amounts which are available from insurance, DSCC, Medicare, or Medicaid (KidCare).

 

The Application Process

How to Apply for DSCC Assistance
For General Information, you can call (800) 322-3722 (Voice/TTY). To apply for the program, you should call your nearest DSCC office and request an application. A list of those offices, with phone numbers, appears at the end of this Section. You will be required to supply information on family finances and your child's health concerns.

You are entitled to receive a written decision within 30 days after you submit your application. The decision must state whether your child is eligible, and the type of assistance you will receive.

When To Apply for DSCC Assistance
You must submit a completed application to DSCC within certain time periods.

In all cases, DSCC must receive a completed application for initial financial eligibility within 30 days after the date of services for which you want assistance. If you apply later than that, you may be reimbursed only for treatment services provided within a 30 day period before the actual date of receipt.

This time period can be adjusted by DSCC for good cause if DSCC is notified of the circumstances within the 30 day time period.

Examples of "Good cause":
(1) A family emergency;
(2) Demonstrated delays caused by the U.S. Postal Service; and
(3) Demonstrated delays caused by the Internal Revenue Service in providing a copy of an income tax return.

If you want to receive continuing financial assistance after your current period of eligibility ends, you should make sure that DSCC receives your application for continuing financial eligibility before the period ends. If an application is received after that period, continuing eligibility can start again only 30 days before the date the application is actually received by DSCC.

 

The Home and Community Based Services Waiver Program

The purpose of the Home and Community Based Service Waiver Program is to help families care for children with severe and persistent disabilities and illnesses in their own home rather than in a hospital or nursing home. To be eligible, the child must:

  • Be an Illinois resident under age 21;
  • Have a medical condition or disability so severe that, without the help of this program, the child would need to be in a hospital or nursing home; and
  • Be determined by his or her doctor to need a level of care that can be provided safely outside of an institution. In addition, it must be less expensive to provide for the child's care outside of an institution.

    This is a "waiver" program, which means that the federal government has given the State permission to deviate from the general rules governing the Medicaid program. In determining financial eligibility for this program, the income and assets of the child's parents are disregarded. The child's own income must be below 133% of the federal poverty level.

If eligible, the child will receive all normally covered Medicaid services. Coverage will include: in-home nursing care; modifications to the home to provide access, accommodate medical equipment or insure the child's safety; respite care; and medical daycare.

This program is administered jointly by the Illinois Department of Healthcare and Family Services (HFS) and the University of Illinois-Division of Specialized Care for Children (DSCC). A DSCC care coordinator will assist you in preparing the application which must be submitted to HFS. If HFS determines that you meet the eligibility criteria, DSCC will assist you in arranging the home care services needed to implement the plan. If HFS denies your application, you are entitled to file an appeal with HFS.

To apply, contact DSCC, at (312) 996-6380. A complete listing of the locations and phone numbers of DSCC offices appears below.

Note: The Department of Human Services also administers a Home Services Program that serves children with disabilities, as well as adults. For a description of that program, see the section of this Guidebook titled "The Home Services Program," in Chapter 11: Independent Living and Productivity.

 

II. What to Do If Assistance Is Denied, Ended or Reduced

Right to Notice
When the DSCC makes a decision on your application, or proposes to change your assistance, you are entitled to a written notice. The notice must explain the reasons for the decision. If your child already receives assistance, the notice must be given no less than 30 days before the date that the proposed change is to go into effect.

The Appeal Process
If you disagree with the denial of your application or with any proposed adverse action, you must make a written request for an informal meeting. You must make this request within 14 days of the day you received the notice. You will then have an informal meeting with the DSCC staff person who made the decision. Within seven days of the meeting, DSCC will send you a written decision.

If the matter is still not resolved, you can make a written appeal request. This request must be made within 14 days of the day you received the notice of the outcome of the informal meeting.

At the informal meeting and in the appeal conference you have the right to do the following:

  • Attend with a lawyer, friend or other advocate;
  • Inspect the contents of the case file and other relevant documents;
  • Present evidence; and
  • Question others present and make statements in support of your case.

DSCC will issue a written decision within seven days after the appeal conference.

If you disagree with the appeal decision, you may file a complaint in the Illinois Circuit Court of the county where you live. You should file this complaint no later than 35 days after the date that the decision was issued. A state judge will then review the decision.

Appealing Decisions Made in the Home and Community Based Services Waiver Program

If you are appealing decisions made in the Home and Community Based Services Waiver Program, you appeal to the Illinois Department of Healthcare and Family Services (HFS).

An appeal should be filed in writing. It also is permissible to make the appeal by calling the toll-free number established by HFS for making appeals. The appeal must be made within 60 days of the date of the notice of the action which you are appealing.

You will be given a hearing, at which you will have the opportunity to present your case before a hearing officer, who will then issue a written decision.

You have the following rights at the hearing:

  • To be represented at the hearing by a lawyer, a friend or relative;
  • To present the testimony of witnesses;
  • To present documents that support your case, such as medical records and written statements from your child's doctor.

If the hearing officer rules against you, you may file a lawsuit in the Illinois Circuit Court to review the decision. You must file this lawsuit no later than 35 days from the date that the decision was sent to you. You or your lawyer will have the opportunity to make written and oral arguments in support of your case. The judge will then decide whether HFS and the hearing officer fairly considered the facts and properly applied the law. The judge can approve your claim, deny your claim, or remand your case to the HFS to be reevaluated in accordance with the judge's instructions.


III. Where to Go for More Information

Regional DSCC Offices

Champaign Regional Office
(217) 333-6528 (Voice)
(800) 779-0889 (Toll Free)
(217) 244-8390 (TDD)

Chicago, City of Metro North Regional Office
(312) 996-2723 (Voice)
(800) 425-1068 (Toll Free)
(312) 996-7584 (TDD)

Metro Central Regional Office
(312) 996-7055 (Voice)
(800) 905-9995 (Toll Free)
(312) 413-3896 (TDD)

Metro South Regional Office
(312) 996-5753 (Voice)
(800) 425-5454 (Toll Free)
(312) 413-3894 (TDD)

DuPage Regional Office
(630) 964-9887 (Voice)
(800) 455-2639 (Toll Free)
(630) 964-9603 (TDD)

East St. Louis Regional Office
(618) 583-2220 (Voice)
(800) 842-7204 (Toll Free)
(618) 875-3902 (TDD)

Marion Regional Office
(618) 997-4396 (Voice)
(800) 451-0464 (Toll Free)
(618) 993-2481 (TDD)

Northeastern Regional Office
(312) 996-9063 (Voice)
(800) 924-0623 (Toll Free)
(312) 996-3099 (TDD)

Olney Regional Office
(618) 395-8461 (Voice)
(888) 841-3232 (Toll Free)
(618) 392-3869 (TDD)

Peoria Regional Office
(309) 693-5350 (Voice)
(800) 382-8569 (Toll Free)
(309) 693-5345 (TDD)

Rockford Regional Office
(815) 987-7571 (Voice)
(800) 651-9319 (Toll Free)
(815) 987-7995 (TDD)

Rock Island Regional Office
(309) 788-4300 (Voice)
(800) 651-9526 (Toll Free)
(309) 788-6443 (TDD)

Springfield Regional Office
(217) 524-2000 (Voice)s
(800) 946-8468 (Toll Free)
(217) 524-2011 (TDD)

Statutes and Regulations
The Illinois Specialized Care for Children Act can be found at 110 ILCS 345/1. The federal Maternal and Child Health Service Block Grant statute, which authorizes federal funding for treatment services, can be found at 42 U.S.C. 701.

The state regulations for the DSCC program can be found at 89 Ill.Admin.Code 1200. The federal block grant regulations are at 42 C.F.R. 51a.

The Home and Community Based Services Waiver Program regulations are at 89 Ill. Admin. Code 140.645.

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