Briefly describe a specific question, or set of related questions, about a health care test or treatment that this program should consider.

Annual reviews for states' Medicaid consumer based services on those permanently disabled, without possibility of stem cell transplant, or miracle from "on high" due to age and/or severity is costly, abusive, and compromises consumers' status with employees' in a self-directed plan due to potential budget reduction affecting wages (however temporary before Appeal). Such reviews also ignore physicians' assessments. Minimally, a more stratified evualation may be implemented in some states, while protecting consumers to avoid stress, and abuse.

Does your question include a comparison of different health care approaches? (If no, your topic will still be considered.)

yes

If yes, explain the specific technologies, devices, drugs, or interventions you would like to see compared:

Utilizing staff that are current in diagnoses, and permantely disabling conditions, and aging.

What patients or group(s) of patients does your question apply to? (Please include specific details such as age range, gender, coexisting diagnoses, and indications for therapy.)

Seniors, disabled on ventilators from polio, neuromuscular conditions, and severe brain and spinal injuries.

Are there subgroups of patients that your question might apply to? (For example, an ethnic group, stage or severity of a disease.)

Describe the health-related benefits you are interested in. (For example, improvements in patient symptoms or problems from treatment or diagnosis.)

Sanity.

Describe any health-related risks, side effects, or harms that you are concerned about.

Annual stress, depression, increased risks from having to hire attorney to represent cases with state Medicaid even though most appeals are won by consumers.

Appropriateness for EHC Program

Does your question include a health care drug, intervention, device, or technology available (or likely to be available) in the U.S.?

no

Which priority area(s) and population(s) does this topic apply to? (check all that apply)

EHC Priority Conditions (updated in 2008)

• Depression and other mental health disorders
• Developmental delays, attention-deficit hyperactivity disorder, and autism
• Functional limitations and disability
• Pulmonary disease/asthma

AHRQ Priority Populations

• Low income groups
• Minority groups
• Elderly
• Individuals with special health care needs, including individuals with disabilities or who need chronic care or end-of-life health care

Federal Health Care Program

• Medicaid

Importance

Describe why this topic is important.

It's increasingly affecting the disabled, without changes in some states. Texas is one.

What specifically motivated you to ask this question? (For example, you are developing a clinical guideline, working with a policy with large uncertainty about the appropriate approach, costly intervention, new research you have read, items in the media you may have seen, a clinical practice dilemma you know of, etc.)

It's know as a "system problem" but it affects us, seriously, and enrages our doctors who appear to have no control over helping their patients who may be double disabled (parlyzed/blind) etc.

Does your question represent uncertainty for clinicians and/or policy-makers? (For example, variations in clinical care, controversy in what constitutes appropriate clinical care, or a policy decision.)

yes

If yes, please explain:

as above

Potential Impact

How will an answer to your research question be used or help inform decisions for you or your group?

Change policy.

Describe the timeframe in which an answer to your question is needed.

Immediate - it's happening to too many, most of whom don't know how to access legal representation, much less deal with such.

Describe any health disparities, inequities, or impact on vulnerable populations your question applies to.

Grossly unfair treatment when states' assume someone who's dis-ABLED, blind, on ventilators, TBIs can deal with all the paperwork, receive 'curt' emails or mail from case manager supervisors - all in all most upsetting, and to resolve with Appeal takes weeks.

Nominator Information

Other Information About You: (optional)

Please choose a description that best describes your role or perspective: (you may select more than one category if appropriate)

Change policy.

Are you making a suggestion as an individual or on behalf of an organization?

Individual

Please tell us how you heard about the Effective Health Care Program

www.disability.gov