Illinois Department of Human Services
Division of Developmental Disabilities
This information bulletin clarifies the healthcare expectations for individuals receiving residential services from the Developmental Disabilities Medicaid Waiver. While healthcare decisions remain a personal choice, Residential providers are to advocate to ensure individuals have access to medical evaluation and treatments appropriate to their individual needs. Residential Providers are to ensure individuals have access to medical and ancillary supports and services for positive health maintenance and medical evaluations and treatments appropriate to their individual needs.
Individuals with intellectual and developmental disabilities may have both usual and complicated health care issues. It is essential that CILA providers advocate and facilitate linkage to appropriate health resources. When there are barriers to service access it is important that all attempts to schedule appointments are documented in the individual's record. Individuals and/or guardians should be informed of the barrier.
Policy & Procedure
Individuals should have access to appropriate medical supports and services for both acute and long-term health issues, preventative and screening services, and evaluation and supports that improve quality of life and engagement in relationships and activities in the community. CILA Providers will ensure all efforts are made to provide access to medical and ancillary supports and services.
- Recommendations for health care services and supports should be scheduled and secured in a timely manner and to minimize missed or rescheduled appointments.
- Timely manner is defined by the time frame recommended by the referring provider's recommendation.
- The CILA provider will document all efforts to schedule and secure timely follow-up appointments. Documentation should be in the individual's record through case notes, Qualified Intellectual Disabilities Professional (QIDP) notes or in some other fashion that can be easily accessed if requested.
- Copies of all documents completed by the individual's medical provider of medical and healthcare supports and services should be kept in the individual's record by the CILA provider. The CILA provider will document all supports provided to facilitate medical appointments.
Health Care Supports and Services
- A comprehensive health assessment (also known as an annual physical), which identifies the individual's health care needs, must be completed annually by the person's primary care provider. The assessment may be completed at the time of a routine medical appointment. The CILA provider will facilitate and support individuals to attend appointments for the annual health assessment. In instances where a family member/guardian chooses to coordinate medical appointments, the CILA provider may have a written agreement with the family member/guardian indicating the responsibilities and expectations that must be met, which include sharing medical information with the provider.
- The individual shall receive all medical and nursing/health care services and supports per his/her health care provider's recommendations.
- Medical care should be routinely provided as appropriate to the person's age, sex and overall medical status including any medical issues associated with a specific IDD diagnosis, per the recommendations/prescriptions of the primary care provider and involved consultants.
- Special Medical Consultations shall be scheduled when requested by the individual's primary care provider.
- If there are problems with authorization of payment or availability of a requested service, the provider shall facilitate any required appeal processes and inform the guardian and ISC of the situation to secure their assistance in advocating for access to the service.
The individual's Health Risk Screening Tool (HRST) should be updated as the individual's medical needs change. The Trainings, Service Considerations, and Interventions consistent with primary care provider's recommendations should be communicated to the ISC so that it can be included in the individual's Personal Plan.
Many aspects of an individual's health should be tracked. Some of these health aspects include, but are not limited to:
- bowel movements
- seizure activity
- repositioning and turning for those with skin integrity issues
- blood sugars, carbohydrate intake and insulin doses given for those with diabetes
Please speak with the individual's medical providers to determine which health aspects should be monitored.
Long Term Conditions
- Care for the health conditions that are persistent or long-lasting such as diabetes, seizure disorders, COPD, asthma, arthritis, heart disease, cancer, and others, requires ongoing medical care and monitoring.
- The residential provider is responsible for ensuring that the individual/staff receives education regarding the individual's health status, diagnoses, and needs for professional medical monitoring. Such educational efforts will be appropriately documented in the staff's training file.
- If the individual's medical needs related to long term conditions cannot be adequately or safely met by the CILA provider, the provider shall request a level of care re-determination by the ISC. Difficulties may be related to the availability of needed community services in certain locations and limitations in provider networks. These issues should be documented in the individuals records and attempts made to address access issues by the provider, ISC and DDD regional staff.
Advocacy and Linkage to Routine and Preventive Health Care
- CILA providers shall maintain a record of immunizations and facilitate routine immunizations. Immunizations can be provided by any health care provider licensed to do so, including local pharmacies.
- The CILA provider will advocate for and link individuals for preventative testing and/or care based on recommended professional guidelines for medical conditions appropriate for their sex and age (e.g., gynecological exams, pap smears, mammograms, prostate exams).
- If the individual cannot tolerate such personal examinations, alternatives will be identified by the medical professional for equivalent screening (e.g., breast ultrasound, pelvic ultrasound, PSA). The CILA provider will provide the necessary supports to obtain alternatives as identified by individual's medical provider.
- The CILA provider shall advocate for routine services and health screening when there are barriers to access. These efforts shall be appropriately documented and maintained in the individual file and shared with the individual and/or guardian.
- When care is denied by insurance companies, individuals and guardians will be informed of the denial and helped to navigate the appeal process.
- Individuals shall have at least annual dental exams or more frequently if recommended by a dentist. Dental care is based on recommendation of the individual's dentist. Dental benefits may be limited by the Medicaid plan but individuals and guardians will be informed of the option of self-paying for dental services not covered by the state plan.
- Using a psychotropic medication prior to medical/dental procedures should be treated as a rights restriction and viewed as a temporary measure for services. CILA Providers should follow Human Rights Committee procedures on restrictions.
- The CILA provider should request that an individual with a seizure disorder who continues to experience unstable or uncontrolled seizure activity be referred for an evaluation to a neurologist by their primary care primary care provider.
- If the individual has a consultation by a neurologist, the results of the consultation will be provided to the primary care provider for review and implementation.
- The CILA provider will maintain ongoing documenting of seizure activity including the precipitating factors, time, frequency, duration, and clinical manifestations to share with the medical provider on a regular basis as determined by medical provider.
Behavioral Health Services
- An individual with a mental health diagnosis or behaviors and/or activities potentially consistent with a mental health diagnosis should be referred to a psychiatrist, psychologist or mental health counselor as recommended or prescribed by the individual's primary care provider.
- Individuals who take psychiatric medications should have their medications monitored every 90 days by the prescribing provider
- In an effort to prevent an individual's unnecessary psychiatric admission, the service team should provide ongoing monitoring and tracking to identify behavioral triggers that may cause a psychiatric admission.
Monitoring for Movement Disorders Secondary to Medication Use
- If an individual is prescribed medications known to have potential side effects impacting motor movement, the agency will monitor the individual for changes in movement. Changes in movement may include immediate, intermediate, or long-term side effects.
- Medications known to have the potential to cause Tardive Dyskinesia shall be monitored using the Abnormal Involuntary Movement Scale (AIMS). The CILA provider will request that the AIMS be completed at the time of initiation of the medication and at least every six months thereafter while the person is taking the medication. It is preferred that the prescribing provider is the person administering the AIMS. A copy of each AIMS will be kept in the individual's record by the CILA provider. A RN Trainer can also complete the AIMS.
- Acute dystonic reactions usually occurring within the first 48 hours of first administering an antipsychotic medication are severe spasms affecting the lips, tongue, neck, shoulders and sometimes larynx. Such reactions are medical emergencies and 911 should be called since breathing can be compromised.
- Intermediate (2-21 days) changes of movement including slowed movement (bradykinesia) or restless movements (akathisia) should be promptly identified as they interfere with the individual's capacity to function and may be emotionally distressing. Such changes should be communicated to the RN Trainer and requires a prompt reassessment by the prescribing provider.
- Long term side effects of Tardive Dyskinesia and Tardive Dystonia may be severe and long lasting and should be evaluated and managed by a board-certified psychiatrist and or neurologist.
- Medication safety, administration and storage is governed by Rule 116. Please review Rule 116 for additional guidance on these topics.
Vision & Hearing Supports
- An individual who has a visual impairment should been evaluated for current needs.
- An individual who is prescribed eyeglasses will be supported in use and care. This may include training to support the person with wearing his/her eyeglasses.
- CILA providers will advocate for ophthalmologic consultation for individuals noted to have cataracts or other treatable disease(s) of the eye
- When an individual whose visual impairment interferes with his/her orientation or mobility, the CILA provider should seek a qualified specialist for training in orientation or mobility techniques or other training needed to support independence. Referrals may include an occupational therapist/physical therapist in consultation with treating provider.
These include but are not limited to:
- Independent eating
- Kitchen and environmental safety
- Adapted emergency procedures
- An individual who has hearing impairment will be evaluated for current needs per a referral by the primary care provider
- An individual who has been prescribed hearing aids should be supported in their use and care.
- Instruction will be provided to support the person in wearing hearing aids.
- When an individual does not wear a hearing aid as prescribed, this is identified as an issue and additional efforts are made to support appropriate use. This may include a behavioral support plan.
- Providers who care for individuals who require adaptive devices for hearing loss must also provide appropriate adaptive safety equipment and emergency equipment for the individuals (e.g. visual alerts for emergencies, bed-shaker for fire alerts, etc.). Staff must be appropriately trained on all supportive and adaptive devices. The individual may require assistance in the proper care and maintenance of hear equipment including cleaning, drying, storage, and battery replacement.
- When an individual uses sign language, which may include ASL (American sign language) or the individual's unique sign language, staff will be adequately trained to communicate in the individual's preferred language.
- Individuals with sign language as a primary means of communication should have a written description of unique aspects of the person's nonverbal communications. Staff shall strive to communicate using the individual's unique non-verbal system of communication.
Other Supports and Services
Specialized services aid in increasing the individual's ability to access the environment more independently.
- An assessment for adaptive equipment and technology may be considered for individuals with interest, need or individuals receiving therapy supports that would benefit from adaptive equipment and technology.
- Examples of adaptive equipment and assistive technology include but are not limited to: durable medical equipment such as wheelchairs of any type, walkers, shower chairs, shower trolleys, hospital beds, eating and drinking equipment, hearing aids, glasses, switches, electronic devices (anything with on/off switch), communication boards and devices, non-electric items (picture boards/cards), dining equipment, barrier-free lifts, transportation needs, canes, etc.
- Providers should ensure that the adaptive devices/technology are clean, in good repair, and are still appropriate for the individual. If any modifications or repairs are needed to the equipment, action must be taken to obtain Medicaid funding/authorization for prompt and timely repair.
- Staff will be trained and demonstrate competency in proper use and techniques to use the equipment. Ongoing training will be provided for all staff responsible in proper use and techniques of all prescribed equipment and devices.
- An individual who demonstrates stereotypic or self-stimulatory behavior (e.g., rocking, hand-waving, hand-mouthing, etc.) should be considered for evaluation for sensory deficits or stereotypic behaviors. Providers should contact the individual's primary care provider for guidance on the appropriate professional to complete evaluations.
- An individual's living environment should provide appropriate stimulation and activity.
- Recommendations regarding sensory needs should be implemented consistently and across all life areas. The ISC should incorporate sensory needs into the individual's PP.
- Staff will be trained and demonstrate competency in implementing the intervention(s).
Speech, Occupational and Physical Therapy Evaluations
Individuals who have identifiable needs for speech, occupational, or physical therapy services (as referred by a medical provider), should receive an evaluation and assessment documenting the need for and type of therapy services to be provided. Written instructions for implementation, if necessary, should be provided to staff. The CILA provider will obtain documentation from the medical provider conducting the evaluation.
Physical Therapy Service Plans
- Therapy service plans of care should include appropriate and measurable therapy goals and reflect anticipated progress.
- Clearly written instructions will be developed to provide clear steps and direction to direct support staff for implementing therapy related activities, including but not limited to, range of motion, stretching, bathing, ambulation, use of equipment and devices. Instructions will include the frequency and setting in which therapy related activities are to be conducted.
- Therapy interventions shall be implemented consistently as recommended.
- Implementation of physical therapy service plans of care may necessitate additional staff support and CILA providers should follow protocol to pursue additional staff support based on the plan.
- For services/therapies/interventions that can be completed when the individual is at home, documentation will reflect measurable progress toward established therapy goals, outcomes, and/or therapy objectives. If the therapy objective is to prevent further decline, measurable information is provided to document that functional status has been maintained.
- Therapy services should not be discontinued or reduced abruptly without an appropriate documented rationale. If there is a lack of progress or deterioration of functioning is noted, appropriate modifications will be made to the therapy service plans.
Upon Final Posting