Information Bulletin #300 from Steve Gold, February 09, 2010
Parents of low-income children under 21 years old with disabilities know how critical Medicaid's Early and Periodic Screening Diagnosis and Treatment (EPSDT) services are. Children under EPSDT have received home health, respiratory care, personal attendant care, private duty nursing services, prescription drugs, PT, prosthetic devices - any "medically necessary" services the pediatrician has prescribed. Some states also have Waiver services for children under 21.
What about when the disabled child turns 21? She/he becomes an adult. Given our splendid health care system, watch out!
Many of the Medicaid services which a State must provide to children under 21 are considered "optional" for persons over 21. Institutional services - nursing homes and intermediate care facilities - are "mandatory" under Medicaid for persons over 21. These classifications are what Congress has decided. Whether your over 21 adult/child receives the "optional" Medicaid services by and large depends on the State in which you live.
Remember that the U.S. Supreme Court in the Olmstead decision in 1999 held that unnecessary institutionalization was discrimination under the ADA.
So let's imagine, one day before the 21st birthday, your child receives a whole range of needed services to keep him/her out of the institution, but the day after the birthday these optional services end.
If you've planned well ahead, your child has applied for Waiver services in a Waiver for persons 21 and over. But what if there are no Waiver services available because of the dreaded "waiting list"? What if without those services your now adult/child is at risk of institutionalization?
Under Olmstead, each State is supposed to "plan" to avoid unnecessary institutionalization. We assume that CMS has explained to States that planning includes knowing which child under 21 will be at risk of instituionalization when the optional Medicaid services end and there is no Waiver slot available. That's not asking for too much, is it?
Parents should make sure the State Medicaid office knows:
Then make sure the State Medicaid office has "planned" for a Waiver slot for your child with funded services. Do not let them tell you either there may be or will be a "wait list." A "wait list" is NOT A PLAN! If your State hides behind the "wait list," tell them to apply to CMS for an amendment to the Waiver in order to increase the number of people 'including your soon to be adult-child' who do not want to be placed in an institution.
Also, remember that Congress in the Deficit Reduction Act of 2005 changed the Medicaid law to allow states to target home and community-based services as a state plan option for persons becoming 21. This eliminates the need for states to obtain a waiver to provide these services for children aging out of EPSDT. Don't let your state hide behind the excuse that there's a "wait list" for waiver services. Does your state use the DRA to provide LTC in-home services specifically for the targeted population of people aging out of EPSDT? Why not? If your State does not, make sure none of the new 21 year olders has to enter an institution, a blatant violation of Olmstead.
There should be a written narrative specifically for your under 21 year old child by the case manager listing what services will be needed to keep the soon to be over 21 year old person with a disability at home. If those services are not or will not be available on the day your child turns 21, there should be in writing a plan to obtain the services immediately. There should be a written transition plan from EPSDT to receiving appropriate Waiver services so that the over 21 person will continue "in the most integrated setting." CMS thinks these "should be" are what States do!
One would hope/assume/want to believe that CMS has instructed States to plan for people transitioning out of EPSDT to avoid the risk of institutionalization. One would also hope/assume/want to believe that each State would and could so plan.
Let's remember that the ADA requires reasonable modifications of policies and programs and the Olmstead decision is now more than 10 years old!
Keeping 21 year olds out of nursing homes and ICFs does not require much planning. Just make your State does it!
Steve Gold, The Disability Odyssey continues
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To contact Steve Gold directly, write to stevegoldada@cs.com or call 215-627-7100.