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  • Step Three: The HCBS Medicaid waiver


    What is the HCBS Medicaid waiver?


    The Office of People With Developmental Disabilities (OPWDD) provides services to over 126,000 New Yorkers with disabilities. Their program is call “The Front Door”.

    To learn about The Front Door, your eligibility, services provided, etc. go to:


    The waiting list for the Medicaid Waiver Program is long, so the sooner you start the process, the better. Fill out the DDP-4 form (Developmental Disabilities Profile) for you child to help you and the appropriate agencies plan for future services. Call the DDSO in you borough to get the form – and keep all copies of any documents you submit!!!


    DDSOs: Manhattan and Bronx: 25 Beaver Street, NY,  NY, 10004; 646-766-3466

    Brooklyn: 888 Fountain Avenue, Brooklyn, NY, 11208; 718-642-6000. Fax: 718-642-6282

    Queens: 80-45 Winchester Blvd, Admin. Bldg, 80-00, Queens Village, NY 11427; 718-217-4242. Fax: 718-217-4724

    Staten Island: 1150 Forest Hill Rd, Staten Island, NY, 10314; 718-983-5200; Fax: 718-983-9768


    Bureau of Quality Assurance

    NYS Commission on Quality Care and Advocacy for Persons With Disabilities

    401 State Street

    Schenectady, NY 12305

    800-624-4143    Fax: 518-388-2860


    Office for People With Developmental Disabilities

    44 Holland Avenue

    Albany, NY 12229

    518-473-1997   Fax: 518-473-1271








    New York to Pursue 1115 Waiver

    New York State is in the process of developing an 1115 Medicaid waiver specifically targeted at individuals with developmental disabilities. By providing services through an 1115 waiver rather than a 1915 (c) waiver, New York seeks to improve “coordination of care across the state’s numerous service systems that support individuals with developmental disabilities, replacing a large portion of institutional care with an unprecedented range of effective, community based, person-centered services, and reforming the financial platform to support such community based services, thereby enhancing the quality of their lives,” according to a concept paper recently released by the Office for People with Developmental Disabilities (OPWDD).

    New York will propose a waiver under Section 1115 of the Social Security Act (the Act) to develop and implement “creative service delivery and payment models that integrate acute and long-term care to achieve improved health outcomes and quality of care while lowering health care costs for the developmentally disabled population.” The target population for the program, known as the People First Waiver, will be the 100,000 New Yorkers who are enrolled in Medicaid and have substantial developmental disabilities as defined in New York State Mental Hygiene Law, eighty percent of whom have been assessed to need an institutional level of care through either an ICF/MR or nursing home.

    Under the People First Waiver, New York will collaborate with stakeholders to develop “specialized managed care models that provide medical and long-term care services to individuals with developmental disabilities.” These entities would coordinate the provision of each enrollee’s health care needs to ensure that “access to health care services does not become a chronic problem” and that services are “delivered in the most appropriate setting consistent with each enrollee’s preferences,” with an “emphasis on the provision of primary and preventive care and services.” Each enrollee will have “a comprehensive plan of care and will receive care coordination and case management services appropriate to their unique needs and circumstances.” http://www.opwdd.ny.gov/2011_waiver/waiver_NASDDDS_news_brief.jsp


    The HCBS (Home and Community Based Service) Medicaid waiver is a federal and state program that waives or doesn’t consider the usual requirements, such as family income, needed for getting Medicaid assistance for eligible disabled individuals. If your child qualifies, the family’s income is not considered. The goal is to keep eligible people at home and receiving services by having the government pay for these services.



    The Waiver program in New York for children includes care at home, in a community-based setting, Bridge to Health for foster children, respite care for caregivers, and the TeleTYpewriter (TTY) that assists people with hearing or speech difficulties communicate on the phone, among numerous other programs.



    What does the waiver do for your child?


    The Medicaid waiver has numerous benefits and programs for you and your child:


    All maximum values are based on 2010 rates.


    • Afterschool programs that offer therapeutic benefits not provided in school may be reimbursed. These may include music therapy, art therapy, hippotherapy (therapeutic horseback riding) as examples. Documentation must be provided to prove the therapeutic value of these services for your child.



    • Assisted Technology. The Dept. of Education has a 5-year equipment rule that says once Medicaid has paid for AT, your child cannot receive another device for 5 years even if he outgrows the one he has. Make sure this is acceptable before requesting Medicaid to pay.


    • Behavioral support: for challenging behaviors ($2,460 maximum per year). This can come in the form of Community Habilitation where a specialist comes to your home and works with your child on behavioral issues or specific problems (including Activities of Daily Living – ADL). A new waiver program called Intensive Behavioral Services is also available if needed. This is a 6-month program that addresses behavioral issues and designs a long-term plan for your child. The IBS is for individuals with substantial challenging behaviors that put them at immediate risk of placement in a more restrictive living environment.



    • .


    • Community access: provides activities that your child would enjoy individually or in a group, day, evening, or weekends.


    • Community guide: can pay for another person to connect your child to local community resources. ($2000 maximum per year.)


    • Community living support: helps your child remain at home and helps with bathing, dressing, grooming, toileting, eating, or other community living activities.


    • Community residential alternative: for people who live in a residential home operated by a provider agency, this program allows your child to receive support in daily living activities, community activities, and household chores. The agency staff provides the specialized training at home.



    • Dental care: dental care free of charge at clinics that accept the waiver.


    • Environmental accessibility adaptation: funds to modify a home to make it more accessible, such as ramps or grab bars. ($10,000 lifetime maximum.)



    • Financial support services: assists families in paying for a home attendant (personal care) through the Consumer Directed Personal Assistance Program (CDPAP), certified home health care (CHHC), or the Lombardi Long Term Home Health Care Program (LTHHCP) to help the consumer.


    • Health Insurance: as a recipient of Medicaid, your child is covered for health insurance. However, if you have a private insurance policy for your child, in addition to Medicaid, 100% of your child’s private health care is reimbursed. For more information, contact Human Resources Administration (HRA), Medical Assistance Program, 330 West 34th Street, New York, NY 10117-0135, 212-630- 1155. If your child is covered by Child Health Plus (A or B), they cannot receive health insurance coverage through the waiver.


    • Home attendant care: after your child is evaluated by a nurse and the request has been approved, your child will get a determined number of hours per week of home attendant care at no cost to you. You can request additional hours if you deem it necessary. You can either have an agency hire someone for you, or you can hire someone on your own. In the latter case, your child’s home attendant will have to register with the agency, go for an initial medical checkup which includes a TB test and blood work. This medical exam must be repeated annually.



    • Medications: prescribed medications are paid for. There is no copay.


    • Natural support training and Individual directed goods and services: these services help to promote the child’s participation in the community. The money can be used for training or to purchase things the person needs in the community. This may also include home care attendant, clothes and shoes, camps, emergencies, transportation, etc. ($500 maximum yearly for goods.)


    • Professional therapeutic services: such as physical therapy, occupational therapy, speech therapy, or nutritional therapy. ($1800 maximum yearly.)


    • Respite: care of the child to give the family a break. This can be hourly or overnight. A Medicaid nurse will determine how many hours per year of respite your family can receive after an evaluation of the child.


    • Specialized medical equipment and supplies: medical supplies or adaptive equipment that the child needs. This could include disposable diapers, chux pads, latex gloves, wipes, etc. ($1734 maximum yearly; $13,474 equipment lifetime maximum.)

    • Support coordination: support coordinator completes all the waiver paperwork and monitors to make sure that all services are being provided. They also make monthly visits to check on the health and safety of the child.


    • Transportation: the purchase of transportation to get the child where he needs to go in the community ($2800 yearly maximum.) Access-a-Ride is also available to Medicaid Waiver recipients.






    Car service and taxi rides to and from appointments may also be reimbursed. You must submit receipts for this reimbursement. In addition, if you have a car, you are allowed $1200 per year for expenses incurred taking your child to appointments or for going to appointments that concern your child.






    Vehicle adaptation: special adaptations to the vehicle such as a van lift, a portable ramp, wheelchair tie downs or brackets, a specialized seat belt, etc. ($6,240 lifetime maximum.)



    The Process: How to apply









    This can be a long and frustrating process. Make sure you make copies of every document you submit and provide 1 original set and 1 copy of all documents to the appropriate agencies. (These papers have a way of getting lost in the system, so a duplicate set may save you time and be the difference in being approved or rejected for the Waiver.) Make sure all documents are submitted on time.

    1. Contact the Intake and Evaluation team of the DDSO to apply for services.






    Or you can apply to many Medicaid provider agencies that serve your county as possible. The waiting list can be long and it may take several months, if not longer, to get available funding for your child, so the more lists you are on the better your chances will be. But don’t tell any of the providers that you are on more than their list, because they could bump you lower on the list if they think you’ll get approval elsewhere. Some agencies may have existing openings or shorter waiting lists than others, so it’s a good idea to call around.



    For a list of advocacy and case management (coordination) agencies in your borough, telephone OPWDD at their main number, 212-229-3231, or contact the Developmental Disabilities Service Office in your borough to get a current Support Services Guide. This important and helpful guide lists all the agencies that provide services for your child including Medicaid Service Coordination. You can also contact Resources for Children with Special Needs (www.resourcesnyc.org) at 212-677-4650 for your borough’s Service Guide. Medicaid service coordination (MSC) is required to access many other waiver services





    2. The Intake and Evaluation Team will screen your child to see if he is eligible for services. His name will then go on a long term (permanent disability) or short term (temporary disability) waiting list.



    3. When funding becomes available for your child, you will be notified that he has been approved for the HCBS Medicaid Waiver.



    4. Then the Intake and Evaluation Team will come to your house to do a social history of your child, a psychological update, a nursing assessment, and complete any remaining documentation. Your input is important to get your child the services he needs.



    5. A Support Coordinator will help you complete the Individual Service Plan (ISP) which develops goals for your child based on the intake assessments. Your input is important here too. To determine the level of funding, the Coordinator may fill out the Supports Intensity Scale and the Health Risk Assessment Tool.



    6. Your family will be given a list of providers (vendors) who work in your region. You may be assigned a provider, or if you have a preference, you can choose one from the list.



    7. Your child will be reevaluated once a year and visited by a nurse twice a year to determine eligibility for the next year. You have to apply annually for recertification using the M11q form. There are also 2 other forms about finances. Keep copies of all documents for your files and submit one original and one copy (to cover your tracks). Make sure you submit these documents on time.



    8. Your child can have a resource level up to $13,800 (2011 benefit level). To be safe, and to avoid exceeding the limit, make sure that all and any monies left him by well-meaning friends or relatives in their Wills are left to a Special Needs Trust Fund for your child and not directly to him. (SSI has a cap of $2000 in resources for an individual.)



    The Fair hearing





    If you disagree with any decision made by HRA (Human Resources Administration) regarding your child’s eligibility or services, or if you don’t understand the decision, you can call the Medical Assistance Program at 212-630-0996 to arrange a meeting.



    This is not the same thing as a fair hearing (you can have both a meeting to explain their decision and a fair meeting to dispute their findings).



    If you want to State to review HRA’s decision about your child, you can request a fair hearing within 60 days of receiving their notice.



    You can request a fair hearing in writing, by phone, in person, or over the internet.



    When you send your request in writing, you must send a copy of their notice to you filled out by you on the bottom (form MAP-2086B (E-S) “Request for a Fair Hearing”.



    Send this copy to:

    Office of Administrative Hearings, New York State Office of Temporary and Disability Assistance

    P O Box 1930

    Albany, NY 12201.

    Make sure you keep a copy for your records.



    By phone: 800-342-3334



    They will ask for information from their decision to you, so keep the notice by the phone when calling.



    Fax: Send a copy of the MAP-2086B (see ‘write’) to 518-473-6735.



    To request a fair hearing in person, bring a copy of the above mentioned, filled out form to either 330 West 34th St, 3rd floor in Manhattan, or 14 Boerum Place, 1st floor in Brooklyn.



    To download the online request form: https://www.otda.state.ny.us/oah/forms/asp



    The State will send you a notice regarding the time and place of the hearing. You can bring an attorney (at your expense), advocate, translator, friend, or another person if you choose. You should bring as much documentation supporting your claim as possible. Make sure you have a set of copies for your records. The State can also provide an interpreter if you give advanced notice.


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