Katie Beckett Waiver Proposal

Allison Lesmann Meaghan Peters Tracy Smith Coni Westmoreland

UTAH REGIONAL LEADERSHIP EDUCATION IN NEURODEVELOPMENTAL AND RELATED DISABILITIES (URLEND)

Katie Beckett’s StoryIn 1981, Katie Beckett was stable enough to go

home.The family did not qualify for Medicaid based on

income but they had met their private insurance lifetime maximum of $1 million.

Medicaid refused to pay for her care at home due to a requirement of a hospital stay for respirator use.

The only options available to the family were institutionalization, becoming impoverished or relinquishing custody to the state.

Tom Tauke, a Republican congressman from Iowa proposed a waiver but it was denied by Department of Health and Human Services.

Vice President George Bush discussed the denial with the President.

President Ronald Reagan made a phone call to the head of Medicaid. The next day, President Reagan announced Katie would be able to go home with aid, citing her case as “an example of unreasonable Medicaid regulations”.

Summary of TEFRA and Home & Community-Based Waivers

TEFRA OptionChildren qualify without regard

to family income All children who qualify are

eligible regardless of whether their disability is physical or mental

Children are covered for the same array of Medicaid services as all other Medicaid-eligible children

Children from all parts of the state are eligible

The TEFRA option can be approved by the federal regional office

Home and Community-Based Waivers

Children qualify without regard to family income

Waiver can be limited to children with certain disabilities, such as SED.

States can establish a limited number of slots

Children can receive additional services as well as those covered in the regular Medicaid program

Eligibility can be limited to particular geographic area

CMS national office must approve the waiver

National Regulations

Nineteen states offer the Katie Beckett, TEFRA Waiver, or a look-alike waiver and eleven states follow the federal guidelines:

1. Eighteen years of age or younger2. Meet Supplemental Security Income (SSI) childhood disability requirements3. Meet the individual state’s criteria for needing an institutional level of care4. Ability to provide medical care safely outside of an institutional setting 5. Cost of care in the community must not exceed the cost of care in an institution.

Current Utah WaiversTechnology Dependent Waiver • 18 and under• 131 children

Autism Waiver (2 year term)• Ages 2-6• Serves approximately 250

Community Services Waiver• No age requirement• 603 children under 19

Cost for all waivers in fiscal year 2013 = $214,915,096

Financial EstimateOf those served by current waiver programs:• only 734 are children • majority of children on a waiting list

Priority for children on these waivers continues to decrease, while during fiscal year 2013 only 13.5% of children on DSPD waivers were children.

Katie Beckett WaiverInstitutionalization$13,022,458 $439,177,920

Savings of $426,155,462 – 97% reduction

Meet Amber:

• Born with Rett Syndrome• Not degenerative but affected girls face

serious health complications• She was not expected to complete

activities of daily living independently• Received developmental therapy and

other services through the waiver• Amber took first steps at age five,

continues to develop additional speech, and can eat and drink on her own

• She is an active participant within her family and her community

Meet Georgia:Diagnosed with hydrocephalus and brain anomalies shortly after birthUncontrolled seizures since birth – 10 to 20 daily She sleeps an average of 4-6 hours a night – as

little as 2 hours Georgia can’t talk, walk, or hold up her head Out of pocket after primary insurance is $2200

per month Katie Beckett Waiver in Utah could offer

assistance with formula, medical equipment, and co-pays that aren’t currently covered under their private insurance

Next StepsFollow-up on Financial Estimates

Request one more data piece from Idaho: how many children have primary insurance that utilize the Katie Beckett/TEFRA waiver? Is the cost for privately insured children less

than those that do not have insurance?Estimate how many children in Utah that would

qualify for the TEFRA waiver have private insurance.

Continue Education and Advocacy:Medicaid departmentLegislative interim committee2015 Legislative session

Recommendations: Tracy Smith

1. Create clinical experience focus groups

2. Legislative expansion-track with specific activities

3. Family support group partnership

4. Past URLEND trainee panel

5. Expand clinical sites

Recommendations: Coni Westmoreland

1. Clinical Experience: Extra student preparation. a. Prepare a PowerPoint for trainees before clinical experiences detailing information about the clinic, what they do, and common disabilities they treat. b. This will allow trainees to do preparation before clinic about the disabilities and common concerns the clinic might encounter.2. Family Partners: for each trainee. a. Family trainees could help identify possible family partners within the state. b. Trainees can meet with the family throughout the year to supplement discussions in didactic classes.3. Enhance leadership and group discussion. a. Utilize leadership book activities for furthering discussion around group problems, issues, concerns, and successes (send to leadership group). b. Further discussion with the group enhances group and team dynamics, along with putting the entire group “on the same page” with possible improvements that can be made to the team.

Recommendations: Allison Lesmann 1. URLEND Program overview for employers and clinical sites. a. Brochure or video clip outlining URLEND program, purpose, and objectives. This could possibly be a leadership project in the future. b. This would be a great way to introduce the program to people who are unfamiliar with it. I think it would be a useful tool for the employers of trainees to explain why time away from work is necessary to complete clinical hours. It would also eliminate the need to explain the program to every person encountered at a clinical rotation.2. Leadership project topics that are more general and not necessarily state specific in order to benefit areas in which trainees live and practice. a. This could be accomplished by having individual projects or grouping trainees together from the same area. b. This would generate more enthusiasm for leadership projects and a better sense of purpose to know that your leadership project is benefitting children in your area.

Recommendations: Meaghan Peters

1. Provide more opportunities for large group interactions.a. Have more time during the orientation to get to know those from other states. b. Moving the first ILDP paper due date to the week prior to orientation to allow for evening outings with trainees.

2. Provide more time to grasp the South Main project.a. 30 minutes during orientation is not sufficient in getting to know group members or in beginning an outline for the presentation.b. Ensure topics are generated by the South Main clinic attendees to be able to address specific concerns.

3. Tour Primary Children Hospital during orientation.a. Trainees living out of state should have the opportunity to visually grasp the clinics they can attend.b. An initial tour may offer perspective that there are multiple options for gaining clinic hours and a trainee may want to visit more than once when living out of state.