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An article published in 2004 by the Southern Disability Law Center states: EPSDT has always been part of the

Medicaid regulations, however, many states were slow to implement these provisions. To correct this problem, Congress amended the Medicaid Act in 1989 to make EPSDT a statutory requirement. See, Omnibus Budget Reconciliation Act of 1989 (OBRA 89). Today, EPSDT is the most comprehensive child health program in either the public or private sector. So EPSDT is a statutory requirement. Every state has to have an EPSDT program. EPSDT is defined under federal law by 42 USC 1396d(r)(5): (r) Early and periodic screening, diagnostic, and treatment services The term “early and periodic screening, diagnostic, and treatment services” means the following items and services: … (5) Such other necessary health care, diagnostic services, treatment, and other measures described in subsection (a) of this section to correct or ameliorate defects and physical and mental illnesses and conditions discovered by the screening services, whether or not such services are covered under the State plan. CMS has spent the past year and a half updating and revising Medicaid regulations to reflect the requirements of CHIPRA. CMS published the following in the Federal Register on April 30, 2010: Children must be provided access to the full range of EPSDT services, as defined in section 1905(r). While section 1905(r) of the Act specifically requires that States provide children necessary health care, diagnostic services, treatment and other measures described in section 1905(a) related to conditions discovered by a screening service, we believe that any encounter with a health professional practicing within the scope of his or her practice should be considered to be a screening service for the purpose of the EPSDT requirement.

Much of this document has to do with ensuring children under 21 receive the "full EPSDT benefit" even if they were initially enrolled through a benchmark program (such as CHIP). It even establishes a minimum state requirement for defining "medically frail" children. At a minimum, States must include children with serious emotional disturbances, individuals with disabling mental disorders, individuals with serious and complex medical conditions, and individuals with physical and or mental disabilities that significantly prevent them from performing one or more activities of daily living. Accordingly, we revised the regulation at Sec. 440.315(f) to reflect this change. These are minimum standards and States have the flexibility to expand this definition. I have not been able to find the words "wait list" in any of the regulations I've read so far. However, 42 CFR 441.56(e) states that EPSDT services be provided "generally within an outer limit of six months." However, CMS did use the phrase in a letter sent out to State Medicaid Directors in January 2001 as part of their Olmstead series: While States may limit the number of participants under an HCBS waiver, they may not limit the number of eligible children who may receive EPSDT services. Thus, children cannot be put on waiting lists for Medicaid coverable EPSDT services. While States may limit the services provided under an HCBS waiver in the ways discussed in attachment 4-A, States may not limit medically necessary services needed by a child who is eligible for EPSDT that otherwise could be covered under Medicaid. Children who are enrolled in the HCBS waiver must also be afforded access to the full panoply of EPSDT services [my emphasis]. This is the same letter that explicitly links EPSDT to Olmstead and ADA: The combination of EPSDT and HCBS waiver services can allow children with special health care, as well as developmental and behavioral needs, to remain in their own homes and communities and

receive the supports and services they need. This letter also defines the concept that has become known as the "full EPSDT benefit": The second purpose of EPSDT services is to ensure that children receive the services they need to treat identified health problems. When a periodic or inter-periodic screening reveals the existence of a problem, EPSDT requires that Medicaid-eligible children receive coverage of all services necessary to diagnose, treat, or ameliorate defects identified by an EPSDT screen, as long as the service is within the scope of section 1905(a) of the Social Security Act…That is, under EPSDT requirements, a State must cover any medically necessary services that could be part of the basic Medicaid benefit if the State elected the broadest benefits permitted under federal law (not including HCBS services, which are not a basic Medicaid benefit). Therefore, EPSDT must include access to case management, home health, and personal care services to the extent coverable under federal law. Semantically, I find it interesting that federal language refers in multiple places to the concept of "EPSDT-eligible children", and that these eligible children have the same right to EPSDT services as Medicaid children. Again, the January 2001 letter states " States may not limit medically necessary services needed by a child who is eligible for EPSDT that otherwise could be covered under Medicaid." In the April 30, 2010 Federal Register, CMS writes: We agree that States should be required to inform families of their rights under EPSDT. The commenter is correct that children enrolled in benchmark or benchmark-equivalent plans may be entitled to additional services. It should be noted that CHIPRA underscored that full EPSDT services must be provided. Therefore, we are clarifying that States must ensure that information is provided to all EPSDT eligibles and/or their families about the benefits of preventive health care, what services are available under the EPSDT benefit, where and how to access those services, that transportation and scheduling assistance are available, and that services are available at no cost.

This is consistent with the requirements of section 1902(a)(43)(A) of the Act and current policy outlined in Section 5121 of the State Medicaid Manual. Information must be given to individuals no later than within 60 days of the individual's initial Medicaid eligibility determination, and annually thereafter if they have not utilized EPSDT services. What this means to parents is simple: if our child’s doctor prescribes something as “medically necessary” then the state’s Medicaid apparatus cannot deny, limit or reduce it. If it’s medically necessary for your child to have 24/7 skilled nursing at home (which is about $200,000 cheaper than providing it in a hospital), then that is what Medicaid should provide you. If your child needs their gastric tube changed once a month so the skin doesn’t have a chance to attach to the plastic, creating a bloody wound when it’s removed, then that is what your child should be receiving. If your child has a chance to communicate using specialized technology, then that technology along with the appropriate training, is due them. Any time your child has to be prescribed a diet to take through a feeding tube because they can’t eat by mouth, that diet should be paid for by Medicaid, even if it’s just pediasure. If your child’s care requires the use of needleless syringes, then you are entitled to one for every day of the month. Have you ever seen a hospital wash out a syringe and use it for a week or two at a time? Yet that is exactly what state Medicaid offices force parents to do, with their stingy policies for home medical supplies. Another issue which seems to keep coming up in discussions about EPSDT is the idea that states can impose caps or limits on EPSDT services In a document from CMS to Idaho written in August 2009, CMS writes:

Any service requested which is covered under Title XIX of the Social Security Act that is not identified in applicable Department rules specifically as a covered benefit or service will require preauthorization for medical necessity prior to payment for that service. Any service required as a result of an EPSDT screen and which is currently covered under the scope of the Enhanced Benchmark Benefit Package will not be subject to amount, scope, and duration limitations, but will be subject to prior-authorization. The idea that the state can issue prior authorization but cannot limit the amount, scope or duration of services prescribed by the child's doctor as medically necessary was supported by two federal court decisions in Georgia in December 2009. In Moore v. Medows, December 9, 2009, the judge wrote of the clear statutory intent that the 1989 amendment adding § 1396d(r)(5) took away a state’s discretion not to provide necessary treatment for individuals under the age of twenty-one. This case specifically dealt with a child whose physician had ordered a certain number of home nursing hours and who was then notified the state was going to reduce them. Georgia published a comprehensive guide for physicians on what EPSDT services are and how to obtain them for their patients. The guide tells doctors that As long as you have completed any necessary prior approval paperwork which includes current information from primary physician, other licensed clinicians, requesting qualified providers and family members or legal representative, the request for the service or payment for the service SHOULD NOT BE DENIED. [emphasis in original] ... The court found that EPSDT required the state to provide for the amount of treatment which the child’s treating physician deems necessary to correct or ameliorate her condition. The only criterion that the state can consider is whether the care requested is necessary to correct or ameliorate the child’s condition [my emphasis].