Latest on Autism Bill ... other things

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INSIDE WASHINGTON

An Update of Important Events in the Nation's Capitol

Published by the National Disability Rights Network

900 Second Street, N.E., Suite 211

Washington, D.C. 20002

voice; tty; fax;

www.ndrn.org

October 27, 2006

Volume 5 No. 14

The mid-term election campaigning is in full swing. In less than two weeks --

unless there are extensive voting problems -- everyone one should know who is in

charge in the House and Senate. Obviously, NDRN and other advocates will have

different strategies for future efforts depending on the final outcome of the

election. Will things remain the same? Will one chamber go to the Democrats?

Will both chambers go to the Democrats? NDRN and other advocates currently

are working on a variety of issues that could be addressed during the

" lame-duck " session -- which begins in mid-November. These issues include FY

2007 appropriations and the reauthorization of the TBI Act. However, if there

is a major change in leadership on Capitol Hill, some of these things could be

rolled over into next year. In addition, NDRN is participating in planning

meetings on issues that will be center stage in 2007, such as reauthorization of

the Developmental Disabilities Act, the ADA Restoration Act, the CLASS Act, etc.

NDRN's Legislative Goals for the 110th Congress will be drafted by the

Legislative Committee and Public Policy staff beginning November 8th. .They

then will be circulated for comments and presented to the Board at its January

meeting. There will be a special Post Election edition of Inside Washington out

soon after the elections. Stay tuned.

As the November elections approach, all House Members are up for reelection and

there are 33 Senate races. It looks like many races could be very close -- with

the results determining who will control the Congress.

Remember voting is a right.

Inside Inside Washington

Autism Bill Stuck in House-Senate Political Battle p. 2

Social Security Advisory Board Offers Framework

for Disability System p. 3

Last Ditch Effort Made to Get Mental Health Parity a House Vote p. 5

Kaiser Commission Releases Medicaid Study p. 5

PANDA Updates:

Update on CMS Medicaid Regulations p. 7

Aging and Disability Resource Centers Funded p. 7

Health Savings Plans - Not the Answer

p. 7 Office of Inspector General Reports Released

p. 8

Autism Bill Stuck in House-Senate Political Battle

· Before leaving for recess, the House of Representatives passed the

National Institutes of Health Reform Act of 2006 (H.R. 6164) by a 414-2 vote.

The bill is sponsored by the House Energy and Commerce Committee Chairman Barton

(R-TX), who now is holding the Combating Autism Act hostage until the Senate

passes his NIH reform bill. In a statement on his web-site, Barton made it very

clear that this NIH bill is one of his top priorities.

One of my primary goals as Chairman of the House Energy and Commerce Committee

has been to reauthorize the NIH in a manner that makes it more efficient. We

must ensure federal dollars spent on research are being used in a manner that

will produce the best possible outcomes.

· The Combating Autism Act (S.843) passed the Senate on September 25th

by unanimous consent. The primary sponsor of the Senate bill is Senator

Santorum (R-PA), who worked closely with Senators Enzi (R-WY), Dodd (D-CT), and

Kennedy (D-MA). In addition, the bill had strong bipartisan support with 48

co-sponsors. The bill's passage in the Senate was hailed as an important step

by Senate Majority Leader Frist (R-TN). There was a companion bill (H.R.

2421) introduced in June of 2005 by Representative Bono (R-CA). That bill also

had strong bipartisan support with 227 co-sponsors. It was referred to the

House Energy and Commerce Committee but never saw any action.

· In the effort to address the issue of autism in this session of

Congress, the Senate-passed bill was sent to the House and referred to the

Energy and Commerce Committee. This was done with the hope that Chairman Barton

would take the Senate bill and move it out of committee and to the House floor

for a vote. However, Barton has refused to release the Senate passed bill and

has stated publicly that he will not consider the Combating Autism Act until --

and unless -- the Senate passes his NIH Reform bill.

· Autism groups are furious that Barton is holding the autism bill

hostage and they are seeking the support of Majority Leader Boehner (R-OH) and

House Speaker Hastert (R-IL) to bring the bill to the House floor during the

lame duck session. To date, however, support from the Republican leadership has

not come through. In an interesting twist, several weeks ago Senator Santorum

(R-PA), primary sponsor of the Senate bill, debated the issue with Chairman

Barton on CNN. Stay tuned..

Social Security Advisory Board Offers

Framework for the Disability System

· The Social Security Advisory Board recently released its' seventh

publication since 2003. In A Disability System for the 21st Century, the Board

focuses on the current state of the disability system in terms of employment.

The report is available at www.ssab.gov/documents/disability-system-21st.pdf.

Noting many deficiencies in current policies, the Board proposes a new broad

model for encouraging employment. Frequently mentioning the disconnect between

the definition of disability in the Social Security Act, which requires an

inability to work, and the Americans with Disability Act, which encourages

full-participation of individuals with disabilities in the work-force, the Board

ultimately concludes that the current approach is harmful to people with

disabilities and " contradicts the policies and values of the [ADA]. "

Recognizing many of the difficulties faced by P & A/CAP clients attempting to

work, the Board leaves many details for change up to federal policy makers.

Important Statistics from the Most Recent Social Security Advisory Board

Report

a.. Approximately 9.3 million adults ages 18 to 64 received Social

Security administered benefits in June 2006.

b.. Of the SSA beneficiaries, 6.6 million received Social Security

Disability Insurance benefits; 2.7 million received Supplemental Security

Income; and 1.38 million received both SSI and SSDI benefits.

c.. The number of SSDI recipients has more than doubled since 1990

when 3 million individuals received benefits.

d.. According to a study by Cornell University, 96% of federal and

state disability related expenditures went towards income security and health

care in 2002, and by implication, not to support individuals with disabilities

in returning to work.

e.. Less than half of youth on SSI graduate from high school.

· The Board is critical of current policies designed to support work

activities for individuals with disabilities, noting these policies have shown

few results. The Board specifically rejects improving either the screening of

SSDI/SSI applicants or the rehabilitation process as a way to reduce the number

of individuals receiving benefits. " Past experience, " according to the Board,

" has shown that these approaches are largely ineffective and are likely to

remain so. " Of particular concern to the panel is the role of time. The length

of the SSA determination process and prolonged disconnection from the labor

force, the Board suggests, may transform an " impaired individual " into someone

who meets the Social Security definition of " unable to work. " Demonstration

projects suggest the best chance to assure self-sufficiency and work is early

intervention. According to the Board, early intervention should occur before

the individual even applies for benefits or loses a connection to the labor

force. Other Board concerns include hundreds of uncoordinated disability

programs, and the failure to account for the " cyclical nature of some

disabilities. "

· Based on these conclusions, the Board recommends a new model which

encourages early intervention. It recommends one model for adults and a second

for youth.

a.. Under the adult model, the Board focuses on front end assessment and

case-management. After extensive assessment of the abilities and resources of a

person with an acquired disability, the proposed system would, in effect, funnel

the individual to appropriate support programs such as rehabilitation and

training. If the assessment or attempts at rehabilitation are unsuccessful,

then the individual would apply for Social Security benefits. The individual

would retain the right to apply for benefits at any time, but the panel believes

that developing an early plan to assure return to employment and

self-sufficiency is the best policy option. Social Security benefits should be

the option of last resort.

a.. The Board's recommendations for youth are less extensive than for adults,

yet it is critical of what it calls the Individualized Education Program (IEP)

system. The recommendations focus upon establishing on-going assessments and

shifts in education and training objectives as the child develops and matures.

Though less extensive in terms of recommendations, the Board bluntly states that

" addressing the needs of disabled children is . . . a societal responsibility,

regardless of where administrative responsibility may ultimately fall. "

· The Board cautions that the early intervention and case-management

model - along with several other recommendations - should not be the

responsibility of the SSA. The Board suggests creating one or more entities to

manage and integrate disability supports. They describe the disability benefits

side as " a clear cut, uniform structure, " while note that " on the employment

support side, we have something close to chaos. "

· The early intervention model, while intriguing and potentially

beneficial, risks the creation of more bureaucratic structure. Certainly the

Board is correct that better coordination among the hundreds of disability

programs, many attempting to encourage and support work, is critical. But if

not designed carefully, the early intervention model could simply create further

chaos. Whether the SSA or other federal agencies pick-up the model is an open

question. NDRN staff experience suggests Board recommendations remain just

recommendations. The Board also addresses common return to work issues such as

health insurance, tax credits, and social security earnings and asset rules.

Some of the more interesting recommendations include:

· Revise the Earned Income Tax Credit to provide a " more generous

schedule for workers with disabilities. "

· Assure health care coverage that is not dependent on eligibility for

SSDI/SSI benefits.

· Provide lifetime certification for health benefits for lifelong

medical conditions.

· Revise Social Security earnings and asset rules to reduce the need of

beneficiaries to restrain earnings to stay below relevant thresholds.

· Create system-wide buy-in programs to allow individuals to retain

supports such as housing and medical assistance, while assuring their

contribution to the costs of these services as employment income increases.

· Though focusing on common issues P & A/CAP clients face in returning to

work, such as fear of losing SSA benefits and health care, the Board does not

strike the issue of the definition of disability head-on. Repeatedly commenting

about problems with an ancient SSA definition of disability in a culture which

now emphasizes work for individuals with disabilities, the Board does not

recommend a specific alternative definition (but does maintain that any changes

to the Social Security definition should not " undermine the protections " under

the current program). The complexity of SSA work incentive programs also

escapes significant note in the recommendations of the Board. However,

recommendations to increase earning and asset rules for disability benefits and

to create broader buy-in programs certainly are very welcome. Ultimately, the

Board sees its' recommendations as a basic framework to shape the future of the

system, and not a detailed plan. If ever considered, the details of the

recommendation will, however, remain critical.

Last Ditch Effort Made to Get Mental Health Parity a House Vote

· The Wellstone Mental Health Equitable Treatment Act of 2005 (HR

1402) was introduced by Representatives Kennedy (D-RI) and Ramstad (R-MN) in

March 2005. It was referred to the House Energy and Commerce and Education and

Workforce Committees and currently has 230 co-sponsors. Unfortunately since

its introduction, the bill - which would expand the Mental Health Parity Act of

1996 and address discrimination in group health plans against people with mental

or substance use disorders - has seen no action.

· In an effort to get this bill to the House floor for a vote before

this Congress adjourns for good, Kennedy and Ramstad filed a " Discharge

Petition " . The goal of the petition is to discharge the House Education and

Workforce Committee and the House Energy and Commerce Committee from

consideration of the bill and get it to the House floor for a vote. A Discharge

Petition requires 218 signatures for further action. This Discharge Petition

(No. 109-18) currently has 165 signatures and can be viewed at

http://clerk.house.gov/109/lrc/pd/Petitions/Dis18.htm.

· Advocates who have House Members who are co-sponsors of this bill

(http://thomas.loc.gov/cgi-bin/bdquery/z?d109:HR01402:@@@P) should check the

list of those who have signed the petition and urge any co-sponsors who have not

signed on to do so.

Kaiser Commission Releases Medicaid Study

· A study titled " Low Medicaid Spending Growth Amid Rebounding State

Revenues " was released by the Kaiser Commission on Medicaid and the Uninsured on

October 10th. The report focuses on the actions taken by states dealing with

Medicaid funding. According to the data collected through an annual survey of

Medicaid officials for all 50 states and the District of Columbia, FY06 marked

an increase in state tax revenues and a slowed growth rate for Medicaid

spending. The average growth rate was only 2.8 percent -- the lowest since

1996. The study examines what states have already done that has affected the

growth rate and what states are planning to do in FY07.

· The significant reduction in the Medicaid growth rate is mostly

attributed to an improving economy and two pieces of legislation: the Medicare

Modernization Act and the Deficit Reduction Act. In addition, an improved

economic situation resulted in fewer people being eligible for Medicaid

programs. This helped to decrease the enrollment growth to just 1.6 percent.

Several states including Tennessee, Florida, Mississippi, and Missouri have

implemented policies that have also helped to reduce the enrollment growth rate

by significantly restricting Medicaid application and enrollment processes. The

Medicare Modernization Act resulted in the transition of six million seniors and

people with disabilities from Medicaid prescription drug coverage to a newly

created Medicare Part D plan. This moved a significant cost out of the

responsibility of state Medicaid programs.

· The Deficit Reduction Act (DRA) of 2005 allowed for new state

flexibility in offering alternative benefit packages and imposing cost sharing.

Some states have already implemented these concepts. Kentucky, West Virginia,

and Idaho had Medicaid plans approved to change benefits. Kentucky and Rhode

Island's have Medicaid plans to now allow health care providers and pharmacists

to deny services if the beneficiary cannot pay the co-payment amount. Other

states are still evaluating the new options created by the DRA.

· Additional issues touched upon in the report were long-term care

services programs, expanding disease management, waiver authority, and program

integrity efforts. Twenty-two states have plans to implement long-care

partnership policies to encourage the purchase of private long-term care

insurance. CMS reports that almost 40 states have said they will apply for

" Money Follows the Person " demonstration grants. In addition, sixteen states

have used the cash and counseling option that allows for self-direction of

personal assistance services. In FY07 twenty-six states have plans to expand

coverage to new populations, or make positive changes to Medicaid application

and enrollment procedures.

· Despite the significant slowing of Medicaid spending growth in FY-06,

states are still under pressure to keep that growth rate low. In light of

rising health care costs, the increasing number of uninsured Americans, the

aging population, and the yearly requirement to balance state budgets the

question becomes what measures states will take to achieve a low spending

increase and what affect that is going to have on Medicaid recipients.

· NDRN and other advocates have real concerns about the availability of

appropriate services and supports for children and adults with disabilities and

their families as states embrace the additional flexibility provided to them by

the DRA. While programs like Money Follows the Person moves Medicaid in the

right direction, other changes to the reimbursement rates for Targeted Case

Management or to the services available under the Medicaid Rehabilitation option

can limit the supports and services available in the community - negating

positive efforts.

Panda Updates

Update on CMS Medicaid Regulations

· It is reported that CMS will release a number of regulations related

to the Medicaid provisions in the Deficit Reduction Act sometime in early

November. However, the regulation related to changes in funding for Targeted

Case Management will not be among them. Apparently, disability community

pressure on CMS around TCM and the Rehabilitation Option has had an impact. Some

believe that the rule for the Rehabilitation Option will not come out until

2007.

Aging and Disability Resource Centers Funded

· HHS Secretary Mike Leavitt awarded nearly $6 million in additional

grant funding for Aging and Disability Resource Centers (ADRC) in 22 states.

For information, visit http://www.aoa.gov.

Health Savings Plans - Not the Answer

· The Kaiser Commission on Medicaid and the Uninsured released a health

policy brief on Health Savings Accounts (HSAs) in October. HSAs are a type of

medical savings account that allow consumers to save for medical expenses on a

tax-free basis. They are linked with high deductible health plans (HDHPs), and

together these insurance and savings options represent a new approach to health

care, commonly referred to as consumer-directed care. This brief, based on

analyses of available data and research, suggests that most low-income families

would not benefit from the use of such plans due to an already low level of tax

liability, the amount of overall income that such plans consume, and that such

plans reduce the use of preventive and primary health care services.

· The " Key Findings " from the paper

(http://www.kff.org/uninsured/upload/7568.pdf) show that:

· Premiums for HSA-qualified health plans may be lower than for

traditional insurance, but these plans shift more of the financial risk to

individuals and families through higher deductibles

· Premiums and out-of-pocket costs for HSA-qualified health plans would

consume a substantial portion of a low-income family's budget.

a.. Most low-income individuals and families do not face high enough tax

liability to benefit in a significant way from tax deductions associated with

HSAs.

b.. People with chronic conditions, disabilities, and others with high-cost

medical needs may face even greater out-of-pocket costs under HSA-qualified

health plans.

c.. Health savings accounts and high deductible plans are unlikely to

substantially increase health insurance coverage among the uninsured.

· This is not the first report to show that these plans work much better

for the healthy and the wealthy than for anyone else. Unfortunately, HSAs have

become the mantra of conservative pundits and policymakers. In fact, when

former House Speaker Newt Gingrich spoke before the Medicaid Commission, he

talked about HSAs as the way to solve the nation's health care woes.

Office of Inspector General Report Released on Personal Care Attendants

· The Department of Health and Human Services Office of the Inspector

General released their finding of a study about states' requirements for

Medicaid-funded personal care service attendants. Since there are no federal

standards for qualified attendants, states create their own requirements. These

may vary greatly based on the program the services are received through and the

delivery model of those services. A compilation of requirement sets from each

program and delivery model from all 50 states and the District of Columbia

totaled 300 different sets. Seven states have uniform requirements for all

programs. In Massachusetts, the only program where you can receive personal

care services has no qualifying requirements for attendants.

· There are six common requirements that occur throughout most of the

sets. They are background checks, training, supervision, age, health, and

education/literacy. 245 out of the 300 requirement sets include a background

check but vary in what a background check includes. For some states this means

just checking references, while in other states it may mean a state criminal

background check or even a national criminal background check. There are 12

states that require a background check prior to employment but the results of

the check would not bar the applicant attendant from providing services. A

requirement for a certain amount of training in order for an attendant to be

applicable was a part of 227 sets. The amount of training, who it is provided

by, and when it occurs varies. The median number of hours required was 28, and

they ranged from just 2 hours to 120. 218 out of the 300 requirement sets had a

minimum age requirement- most often this was 18. In some sets the age is as

young as 14 and in 82 there is no age minimum at all. Supervision requirements

were included in 197 sets and varied by who was the person responsible for the

attendant supervision, the method, and the frequency. The three most common

minimum health requirements were a negative test for tuberculosis, the ability

to physically perform the services in the plan of care, and to be " free of

communicable disease. " Health requirements like these and others that include

passing a physical examination, having a lifting requirement, or passing a drug

test were part of 161 requirement sets. The sixth common requirement for an

applicant for a personal care attendant position is the ability to meet a

certain literacy or educational criterion. Of the 124 sets that have these

types of requirements, 108 involve meeting a literary standard and 24 require

having received a general education diploma or a high school diploma. There

were many other requirements within the sets including requiring an attendant

applicant to have an actual home health aide certification, have a social

security number, or meet a motor vehicle accessibility standard.

· The other part of the study included an analysis of how states are

making certain that the requirements set forth for attendants are met.

Forty-eight of the 50 states that have requirement sets delegate the

responsibility of ensuring that individual attendants meet those standards to

other entities (agencies, independent providers, case managers, etc). Most

states, 47, reported some sort of direct oversight of the delegated entity

through a process of auditing or personnel review. To view the full report go

to http://oig.hhs.gov/oei/reports/oei-07-05-00250.pdf

All issues of Inside Washington are available at www.ndrn.org under Legislative

Affairs