Who Can Get Community Services?

The purpose of the project was to document and raise consciousness about the funding issues facing counties, and people with disabilities. The goal of the project is to use the information obtained to:

• assist counties in determining what specific and general ramifications will occur because of the 1999-2001 budget.
• be presented in a clear and compact form that can be circulated to provider and advocacy organizations to inform them of the challenges being placed on local municipalities and in turn themselves.
• be a tool to create awareness in and outside of the world of disability, informing the public of the severity of the situation.
• be presented to the legislature, encouraging the state to take steps to remedy the situation.
• be used to raise consciousness about disability funding issues in this year's campaign season.
• be used to start building momentum in the early part of 2000 for the next biennial budget.

For more information, please call:

Waisman Center	(608) 263-0271
Wisconsin Coalition for Advocacy	(608) 276-0214
The Arc-Wisconsin	(608) 251-9272
Wisconsin Council on Developmental Disabilities	(608) 266-7826

This report is also available in complete text at the following website:

http://www.waisman.wisc.edu/waitinglists/

Nowhere is the disparity between the demand for services and the level available more apparent than in the State of Wisconsin. Currently, there are over 11,000 people (unduplicated count) on the Community Options Program (COP) waiting list, and 6,000 people (unduplicated count) on the Developmental Disabilities waiting list (Wisconsin Council on Developmental Disabilities, 2000). In the 1999-2001 State biennial budget, 581 COP placements were appropriated to serve the 11,000 plus people on the COP waiting list (The Arc-Wisconsin, 2000).

Except for the recent action on Medicaid Personal Care, the Governor and the legislature have largely turned their backs on the community services crisis for people with disabilities. For the third consecutive biennial budget, Wisconsin counties have been forced to decrease services or add tax levy revenue to support programs mandated by the state. After the 1999-2001 budget, Wisconsin's counties again had to add additional local funds to support these programs. State Community Aids funds used to support county human services have fallen from 46% of the county's total community services expenditures in 1988 to 26% in 1997. During essentially the same time period (1988 to 1998) county human service expenditures rose 139%, and State funds for Community Aids rose 2.4% while county funds increased by 174% (The Arc-Wisconsin, 2000). As for Specialized Transportation, the Department of Transportation has had an increase of over $95 million from 1996 to 1999, but the 85.21 Elderly and Disabled Transportation Program has only increased a total of $1.2 million over the same period, with no increases in 1997 and 1999 (Department of Transportation, 1999).

In order for counties to provide services that are mandated by the state, many have had to increase tax levy, place additional strains on families and providers, and ration services. This comes at a time when both federal and state governments have reported a surplus and are quarreling over ways in which to use this additional revenue. Instead of using it to enhance and support mandated programs for vulnerable citizens of our state, income tax relief, sales tax relief, and property tax relief are the topics of conversation coming from our legislators and the governor's office.

The data in this report regarding shortages in services represents the most up to date information collected from counties on this issue (February to March 2000). Here are some examples of the findings from the survey: Over ninety-four percent (94%) of reporting counties have waiting lists for various funding sources or support programs for people needing long-term care services. One hundred percent (100%) of responding counties recently increased tax levy to supplement the loss in Community Aids funding. Because of personal care agency closings, restrictive settings are more readily used to serve people. Forty-six percent (46%) of responding counties increased tax levy to supplement the lack of sufficient 85.21 Transportation funding. In other words, if you are a person with a disability the chances of winning the game and receiving the community services you need are getting slimmer every year.

"After applying inflation to current services and addressing crisis situations, no money is left for new people." Rock County

Of the responding counties that have waiting lists for various funding sources and/or services only Community Support Programs and Vocational Services have waiting lists that on average are less than two years

Over fifty-eight percent (58%) of counties responding feel that the 1999-2001 budget will increase the size of waiting lists for people needing long-term care services

"We are seeing a growth in demand due to an increasing population in the county; county increases are less than the level of demand, even though the county provides tremendous overmatch." Outagamie County

Counties feel that institutional care, loss of skills for the individual, inadequate care, caregiver stress, and abuse/neglect are and have been the result of waiting lists

"History has shown that lack of funding for community services has resulted in persons being institutionalized. It also creates a higher level of family burnout, which can lead to abuse or institutional victimization." Walworth County

"Conditions will worsen-people will finally enter the system when they need institutional care and will have struggled to stay in the community with only private resources, causing lesser quality of life." Racine County

"For mental health: increased hospitalization, conditions worsening, increased emergencies and increased stress, and more need for CSP. For Developmental Disabilities & LTS: increased nursing home placement, death, deterioration of health, and increased emergency cases." Jackson County

Over the last 14 years, waiting lists for people with developmental disabilities has more than doubled, and it appears that the trend will only continue (WCDD Data, 2000)

Over seventy-five percent (75%) of counties responding were detrimentally affected in 2000 by receiving only a slight increase in Community Aids funding

Counties reported having to cut many programs in long-term care support and other areas in order to resolve this situation

"Over the past few years the County Human Services Department has eliminated most low to medium priority programs. Only high priority programs remain. We have maintained a commitment to fund these programs. We are concerned that the COLA's given in recent years have forced these agencies to reduce their services." Dane County

"We cut prevention programs for youth and Community services for adults." Ozaukee County

"County had to increase funding to cover additional costs. Mental Health Budget was reduced." Richland County

"Simply, decreases in Community Aids result in cutbacks in service across this department. Cuts hit heavily upon DD services because of the size of the budget in that areas." Outagamie County

"An AODA residential recovery program was discontinued and waiting lists increased. All other programs with the exception of emergency inpatient and drug costs were vigorously restrained. The analogy I would use is that we still serve three meals a day but with smaller portions and fewer calories, thereby increasing the likelihood of malnutrition." Kenosha County

Forty-nine percent (49%) of counties responding had to increase county tax levy, in the Developmental Disabilities system alone, by more than $75,000 in order to make up for the community aids deficits

"The county will be required to pick these services up at a cost to the county taxpayer." Columbia County

"$200,000+ increase in county tax levy in 2000." Rock County

Counties responding also reported an increase in other mandatory services such as jails and other institutional services

"Less access to Mental Health/AODA services, missed appointments because of lack of transportation, and waiting lists for elderly and disabled places more burden on family and community organizations. Less staff time for prevention - increased out of home placements." Burnett County

"As the public and private sectors funnel services more narrowly, this increases a wider gap of vulnerability in the community in which services could only be received through some type of crisis." La Crosse County

"More institutionalizations; more stress on family members, which will have a ripple effect on other services." Shawano County

"Individuals at risk will show up in areas where services are mandatory, i. e. corrections." Jackson County

"Without adequate AODA and Mental Health services, correctional services increase by default. The L. A. jail is now our nation's largest inpatient mental health facility." Kenosha County

Fifty-one counties, or seventy-one percent (71%) of Wisconsin counties have had personal care agencies close in their county, totaling 104 agency closures in Wisconsin since 1997 (Rep. Mark Meyer's Office, 2000)

"We have lost two agencies in the past one and one-half years. The other agencies have stopped accepting Medicaid for personal care services. They will provide the services, but only at a rate higher than Medicaid." Dodge County

"There are no personal care providers in Green Lake County. Three years ago we had four Medicaid personal care providers, however, Medicaid reimbursement was not sufficient to cover program costs." Green Lake County

"We have lost two home health and personal care agencies in the last 12 months. Financial issues were paramount in their decisions." Jackson County

"Most agencies are watching pending legislation proposed to save Personal Care Services. I fear that remaining personal care services will drop certification. We have already had three or four agencies in the county drop Medicaid certification because reimbursement didn't meet expenses..." Outagamie County

Sixty-four percent (64%) of counties responding report that an inadequate supply of personal care workers has played a role in agencies discontinuing services

"Unemployment in this area is less than 2%. This has created many unfilled jobs, rapid turnover, poor quality work ethics, people being forced into placement, extensive overtime, use of temp services." Outagamie County

"Recruitment and retention continue to be major issues even for the one remaining provider in our county." Jackson County

Counties responding also reported that state audits, unclear guidelines for personal care agencies, and lack of funding have also contributed to personal care agencies closing

"We had a huge, unfair disallowance which was just recently overturned. The last year has been classic state harassment on this program-unclear rules, programs administered according to state staff guidance, then auditors sanctioning agencies." Brown County

"If the state continues to conduct audits that spend more time looking at paper work and hardly no time at whether service was provided and the quality of the service, there will be no agencies providing personal care. Also, low reimbursement for worker and no reimbursement for all the work the nurse must do." Columbia County

Counties suggest that rationing of services, interrupted, or delayed personal care service for consumers, and increased use of restrictive settings for consumers are a direct result of personal care agency closures, low MA reimbursement rates, audits, and worker shortages

"It is not so much that personal care is discontinued; it is that the frequency of personal care is often interrupted because of lack of available staff." Kenosha County

"It hasn't caused anyone to discontinue the personal care program, but it's made it very difficult to maintain the program and may have resulted in less hours being provided." Richland County

"Some individuals have been relocated to more restrictive settings." Waukesha County

"In many cases people will have to enter nursing homes." Kewaunee County

Fifty-nine percent (59%) of counties responding state that 85.21 funding is insufficient to provide adequate transportation services

"Transportation funding has essentially remained static with no ability to meet increased demand. Labor costs, gasoline costs, and other costs are higher, resulting in existing funds purchasing fewer rides." Dane County

"85.21 covers only 25% of cost of our transportation program." Sheboygan County

Forty-six percent (46%) of counties responding state that they had to increase tax levy due to low 85.21 funding from the 1999-2001 State Budget to create an adequate transportation program

"$100,000+ increase... 51 Board does not benefit from 85.21 funding in this county." Fond du Lac County

Transportation concerns for rural areas tend to be greater than for urban areas

"Additional rural routes are needed but unable to be provided because of funding." Sheboygan County

"We are a rural county with few transportation resources." Monroe County

"In rural Crawford County there is no feasible way to have mass transit. There is a small cab company in the Prairie du Chien area, but the rest of our county is without transit. There are no buses that go through our county, there are only rail trains, no longer passenger trains. Therefore, it is very difficult for people to get around for medical, work, etc. Transportation is a big issue." Crawford County

"Rural transportation is a real concern." Dunn County

Seventy-five percent (75%) of counties responding must ration the kinds of transportation provided due to low 85.21 funding

"In the rural programs only -- 3 roundtrip rides/wk; Hours of operation: M/W/Fri 9 to 5 PM, Tues/Thurs 9 to 4; Riders M/W/Fri between 4 & 5 are limited to medical trips only." Outagamie County

"Transportation for employment is funded out of totally County funds. 85.21 funding is only used for intermittent rides and high demand for elderly medical transportation has resulted in nearly all other services being discontinued." Calumet County

CHANGE FROM THE TOP

• Pennsylvania Governor Tom Ridge announced a five-year plan to serve more than 14,000 persons with developmental disabilities who are waiting for services by appropriating $853 million to develop personally tailored services.
• California Governor Gray Davis has requested an $198 million dollar increase in the State's Department of Developmental Services.
• Governor Jeb Bush of Florida approved a plan to expand the Medicaid waiver for people with developmental disabilities by creating a program focused on providing a full range of services for people transitioning from ICF/MR's to the community.

LITIGATION

• A federal lawsuit was filed on behalf of six people with developmental disabilities in the state of Oregon to force the state to pay for residential and intensive in-home programs as required under the Americans with Disabilities Act.
• In West Virginia, the U. S. District Court found that in the case of five children with developmental disabilities who were placed on waiting lists for services, rights were violated according to Title XIX of the Social Security Act that guarantees freedom of choice and the receipt of Medicaid services with reasonable promptness.

ADVOCATE ACTION

• In Nevada, advocates were successful in convincing legislators to fully fund the residential and day services waiting lists in 1997.
• The Arc of Maryland was successful in bringing together a coalition of three statewide family based groups to create solutions to the waiting list for residential and day services.

LOCAL SOLUTIONS AND ACTION

• In Dane County, the YWCA collaborated with the Community Living Alliance, Home health United, Independent Living, the Urban League to train people receiving W-2 funding as Certified Nursing Assistant (CNA's), therefore helping reduce the personal care worker shortage.
• The Arc-Wisconsin argues that if the state adds $10 million of GPR a year for the next four years for services the state will generate $100 million in federal waiver funds: enough to address the entire waiting list.
• Introduction of Grassroots Empowerment Project, consumer run self-help and peer support organizations which alleviates pressure of Community Support Program (Mental Health) case loads for counties.
• Waupaca County and the Arc-Wisconsin suggest that the State/legislature pass legislation that requires HMO's or third party insurance payers to help pay for Birth to Three services.