a discussion on waivers, medicaid eligibility, etc for kids with DS

WAIVERS BY STATE


MR WAIVERS, WHAT THE HECK ARE THEY?

IN MAINE, THE WAIVER IS AS FOLLOWS:

Home and Community Based Waiver Services for Persons with Mental Retardation (HCBW)
This is a federally approved alternative to ICF-MR services. It is intended to reduce the reliance on institutional care in Maine. It offers a wide array of services that allow each person's unique needs to be planned for and addressed in a community setting. BDS determines eligibility for this benefit. The most commonly used services in the waiver program are:

Residential Training services: Offered only in a DHS licensed home, this service provides training and support in areas such as activities of daily living, social and adaptive skills, and community inclusion.

Personal Support Services:Services offer assistance and support in independent living. Also these services help the individual cope with the demands at home and in the community.

Day Habilitation Services: These types of services focus on health and social services such as behavior management, skills development, and physical development.

Supported Employment: This service provides ongoing support to those who need it in order to perform in a work setting at the prevailing wage.

Other Waiver Services: The following are additional services available through the Waiver: respite care, environmental modification, communication assessment, crisis intervention, and consultative services. (These services have limited availability or specific criteria for eligibility.)



EACH STATE VARIES. PLEASE CLICK THE ABOVE LINK TO FIND YOUR STATE. MR WAIVERS ALLOW WHAT IS CALLED A "FUNDING STREAM" FOR YOUR CHILD AS THEY BECOME ADULTS. IT ASSURES SERVICES WILL CONTINUE. IN MANY STATES, THERE ARE VERY LONG WAITING LISTS. MANY SUGGEST THAT YOU APPLY AS YOUNBG AS AGE 10 TO GET ON THE WAIVER WAITING LIST. IT IS IMPERATIVE THAT YOU DO SO AS YOUR CHILD APPROACHES THEIR TEEN YEARS.

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Waiver programs are so-called because they involve the 'waiving' of some statutory rule(s) of Medicaid such as the requirement that all eligible persons within a state be offered the same services. States apply to the Center for Medicare and Medicaid Services (CMS) for waiver approval. Medicaid waivers can be tailored by states to meet their local needs and so may have specific eligibility criteria applied (e.g. serving a particular population group or area). States can limit the number of people served on waiver programs by specifying a certain number of 'slots'. The waivers have limited time duration and states are required to apply for extensions if necessary.
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Types of Medicaid WaiversQuote:
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Two Medicaid waivers frequently used by states are 1915(b) and 1915(c) waivers (referring to different sections of the Social Security Act). 1915(b) waivers provide managed care services to Medicaid populations and 1915(c) waivers enable states to provide HCBS to people who would otherwise be institutionalized. There are different sub-groups of these waivers, for example 1915(c) 'model' waivers are intended to allow states to test new HCBS and have an upper limit of 200 slots. Programs authorized under Section 1115 of the Social Security Act allow experiments, pilot or demonstration projects that promote the objectives of the Medicaid policy1.
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THE MR WAIVER IS ONE OF THOSE TIMES YOU WANT YOUR KID TO "TEST DOWN" OR BE HALF ASLEEP DURING EVALUATION. IT IS ABSOLUTELY NOT THE TIME TO TOOT THEIR HORN AND TELL THE CASE WORKERS HOW AWESOME THEY ARE AND THEIR NEWEST FEAT. THE WAIVER IS DEPENDANT ON THEM NEEDING A CERTAIN LEVEL OF CARE. THAT LEVEL IS OFTEN CALLED "INSTITUTIONAL LEVEL OF CARE" ALTHOUGH IT DOESNT MEAN YOUR CHILD MUST BE IN AN INSTITUTION, JUST THAT THEY COULD BE, BASED ON THEIR NEEDS.

MR WAIVERS ARE MOSTLY "CONSUMER DIRECTED". MEANING THEY ARE SET UP WITH THE SPECIFIC NEEDS OF THE CLIENT. THEY CAN OFTEN HIRE FAMILY MEMBERS TO DO THEIR DAILY CARE NEEDS, OR EVEN ARRANGE FOR PAYMENT FOR AN APARTMENT OVER THE GARAGE FOR WHICH THE RENT IS PAID BY THE WAIVER TO YOU, THE PARENTS. THIS PROGRAM IS THE KEY TO FUTURE RESOURCES FOR YOUR CHILD. REMEMBER, AFTER AGE 21, AFTER SCHOOL IS REQUIRED TO HELP YOU, YOUR CHILD WILL STILL HAVE NEEDS. THEY WILL NO LONGER HAVE IEP'S, THEY WILL NEED THE MR WAIVER.


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the following is copied from an old post...years old, most of the info still pertains, but please check with your local agencies:

you may be applying for the MR Medicaid Waiver. This is a funding stream for a lifetime of adult services, so you have to be able to show "a continuing need." It is important to stress that your child may never be able to live completely on his own and would always need support.

When applying for adult benefits, it is not time to "show off" what a person can do. It is time to show in detail the "level of support" a person needs. I know it is very hard to do when you are still in a "school mindset," but it is necessary.

For example - If he can't be left alone at home on his own, then he does need continuous daily supervision.

Does he Cook? - Well this really means can he cook what he wants, when he wants, using anythng in the kitchen on his own. So in terms of supervision, he probably does not cook.... or within very limited and defined means.

- Microwave only,
- Microwave and stove top only,
- Microwave, stove top and oven

- Any time on his own
- Any time an adult is in the house
- Only if an adult is in the kitchen
- Only if an adult is one-on-one with him

When I give parents an example of what to think of, I say to imagine their child was placed in a brand new apartment or even house on his own, but knowing there was say a two-way mirror or something so he would be in no imminent danger, but no one would be there to assist him directly on anything or even monitor him. Then from the time he got up until the time he went to bed,what could he do - AND HOW WELL COULD HE DO IT?


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The Mental Retardation Medicaid Waiver in Virginia can be applied for at any time, and here it done through the Regional Community Services Board or the MR/MI agency. To actually get a waiver slot, one does have to be eligible, if not using, Medicaid Health Insurance. I advise applying for this ASAP as there are usually very long waiting lists.

If one applies and recieves SSI for even one month, then you can request the short two-page form for your teen from the local Dept. of Social Services and it is a pretty routine process.
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Any person with DS can apply at any time for a Mental Retardation Waiver funding stream. For example ^&*() several months ago got it for her out in Iowa as there was no waiting list in her area and maybe in the state. %^&*( is a middle school student, and her Mom is using it for respite and some community based outings. The great thing is that once accessed the funding will be there later on for day activity programs if one is not able to work, for in-home services, respite and residential placement, too.

Again, it is good to get on any official list as soon as possible. One needs to see how a state uses a Waiting List. Some may base openings on length of time on a waiting list, while others may strictly base it on necessity or urgent need.
And, you just never know when a legislature might allocate more money so that there might be several openings at one time, and you would hate to not have a child or adult on the list. I mean it could be that a young child with a family in crisis who might be at-risk of immediate institutionalization might be given a waiver if the need was judged to be the most acute.

Once approved through a verbal Level of Functioning Test/Inventory, then ask about criteria to get on the Emergency or Urgent Waiting List. Let your Case Manager know of any factors which might raise your chance of getting bumped up the list. (parents age, health, emotional issues) I hate to say it because right now in so many states an MR Waiver is "crisis driven," it is not really something you wish to get, although you really need it for adult services.
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1- Supplemental Security Income - SSI which is the cash benefit which at age 18 a teen can apply for as a "family of one." Currently a full payment is $658 a month. *Call Social Security Administration 800 line or the local area office for information and a form. Also look online for great information.

2- Medicaid Health Insurance - Again at age 18 can be applied for by a teen at age 18 as a "family of one." You want to establish the eligibility because you need this eligibility if you want to qualify and get a waiver. You could also use it as a secondary insurance if your teen can be on your family policy. Or you can use it as the teen health insurance policy. *Call your local Department of Social Services for a form. Again, if the teen can get SSI for even one month,you can use the much shorter two-page form.

3- Waivers - Each state has different kinds of waivers - which in the case of the Mental Retardation Medicaid Waiver means that it provides funding for services to keep one at risk or institutionalization in the community. Don't get too upset because the criteria for "institutionalization" are not all that severe overall. There are other kinds of waivers for different disabilities including perhaps for those with mental illness, those needing assistive technology etc.

a- Usually it is the Mental Health Agency that one contacts about whether there is an MR Waiver in your state. Again you can apply for it at any age.

b- Usually, there are waiting lists whether at the state level or at the community level because of limited funding for slots. Again, you need to see if your state maintains just one huge state list or how it is devided by regions or communities. Then contact where you fall for more details. And then see how the waiting list is done - is it length of time on the list - if so, get on it at birth. Usually, however, it is based upon emergency need criteria, which in many cases means aging out parents or a "family crisis" of one sort or another.

c- First off, find out the process to qualify and do so for a child, teen or adult.

d- Second of all, find out how to get on the Emergency Waiting List - if you meet any of the criteria because this is usually where all placements are made from.

e- Do check out all criteria for receiving an MR Waiver now or in the future in terms of income, resources, working and earnings just to know.


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Everyone with a child with Down syndrome needs to:

1- Find out what Waiver programs exist in their state.

2- Is there a statewide waiting list or a more regional one? Then is there just one big list or an Emergency or Urgent Need sublist and what are the criteria to be placed on that?

3- Find out how placement are made - ie. from length of time on the waiting list or based upon the need of the family/applicant's situation. This will give you an idea if applying early is of necessity or not.

4- ALWAYS ACCEPT A MEDICAID WAIVER SLOT because as long as you use one service with a certain time period of being offered, your son or daughter will be able to access the range of services offered in your state.

5- Note a Medicaid Waiver slot is not portable from one state to another. Now the individual may be placed at the top of a list if really needy, but he/she may need to begin the process all over in another state.

6- Medicaid Health Insurance does not change from state to state. However, the services offered in each state will vary.

***And don't think that any discussion of cuts in Medicaid may not well impact just how much state funds there are for Medicaid Waiver slots. A Waiver is a federal/state match of funds.
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Each state has different waiver programs, which means the program waives the normal requirements and expense limitations on Medicaid funds to allow for use by the disabled. So if you wouldn't normally qualify for Medicaid because of your income, that is waived because you or a family member has a disability. However, its complicated - each state has different waiver programs, and each program may have different eligibility requirements for either need or income.

The link I posted at the top is where you can find all the waiver programs for any state


And yes, if you're already on regular Medicaid, a waiver might pay for additional services or equipment, so it's worth applying for. The best policy is to always apply - if you aren't eligibile, then you'll know, and if you are, then you'll get the benefits or get on the waiting list. Generally, a waiting list is just that - you get nothing until your number comes up, and then you get everything. At least that's how it works in my state.


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In Virginia, the Developmental Disabilities Medicaid Waiver does not cover individuals with Mental Retardation because there was the Mental Retardation Medicaid Waiver in place. The DD Waiver in Virginia does not provide funding for residential programs so this is one key difference.

In Virginia, the DD Waiver provides services for those with cerebral palsy, autism, and other developmental disabilities which result in cognitive delay and other limitations.
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The MR waiver is often thought of as a "ticket" because services such as respite and community supports are not tied to family income as so many other supports for special needs kids are. Once you are on the MR waiver it makes the whole path for services and medicaid so much easier .

QUESTIONS TO ASK...YOU USUALLY CAN APPLY FOR THE MR WAIVER AT ANY AGE

This can be a very confusing topic because you are actually seeking information on a few things:

1- Who in your state can qualify for Medicaid Health Insurance birth to 18/19 as a child? There is an income or means test.

2- Who in your state can qualify for a Mental Retardation Waiver? There is a level of functioning test.

3- When can one apply for a Mental Retardation Waiver slot, especially if there is a Waiting List?

4- What are the criteria to be placed on the Emergency or Urgent Care Waiting List? (This is the list to be served first if there is a Waiting List.)

- PLEASE NOTE: THERE IS NO INCOME GUIDELINES TO BE MET TO GET AN MR WAIVER. IT IS BASED ON THE DISABILITY AND LEVEL OF FUNCTIONING OF THE INDIVIDUAL. MOST INDIVIDUALS WITH DS WILL MEET IT EASILY.


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