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 care 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 child with a disability turns 21? She/he becomes an adult. Given our plendid 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 the over 21 adult receives the "optional" Medicaid services by and large depends on the State in which they 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, the young adult receives a whole range of needed services to keep him or her out of the institution, but the day after the birthday these optional services end.
If you planned well ahead, the person has applied for Waiver services for people 21 and over. But what if there are no Waiver services available because of the dreaded "waiting list"? What if without those services the person 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 chich child under 21 will be at risk of institutionalization 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:
1. the birth date of your child;
2. the anticipated services needed to keep the child at home after the 21st birthday; and
3. that an application for Waiver services has been made well in advance of the 21st birthday, just to make sure the State gets the message.
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 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 child - who do not want to be placed in an institution.
Also, remember that Congress changed the Medicaid law to allow states to target home and community-based services as a state plan option for persons becoming 21, in the Deficit Reduction Act of 2005. This eliminates the need for state to obtain a waiver to proved these services for children aging out of EPSDT. Do not let your state hide behind the excuse that there is a "wait list" for waiver services. Does your state use the DRA to provide long-tern care 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 people that are 21 has to enter an institution, a blatant violation of Olmstead.
There should be a written narrative specifically for the under 21 young adult by the case manager listing what services will be needed to keep the soon to be 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 21 year old will continue "in the most integrated setting." CMS thinks these things are what States should 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 do such a plan.
Let's remember the ADA requires reasonable modifications of policies and programs and the Olmstead decision is now more that 10 years old! Keeping 21 year old young adults out of nursing homes does not require much planning. Just make your state do it!