Income:

Only 30% of the people in our sample are working, roughly the same as the national average for disabled people. Employment is the source for basic living expenses for only 26%, SSI must suffice for 20%, SSDI for 22%, and other disability benefits for 15%.

Rick: I'm concerned about earning a good living and establishing a lifestyle (home ownership, etc.), only to lose it all if I am unable to work and have to go back to government programs. To receive IHSS, I’d have to live on little more than $700 a month. My current rent is $700 per month….

Jill: I’m in a Catch-22. I’m not low enough to be considered low income but earn too much to qualify for services/benefits.

Twenty two percent of our sample live on benefits of $740 per month or less. Another 25% live off of $ 1,200 or less. Only 19% of respondents receive more than the $34,000 per year necessary to be the equivalent to SSI/SSDI, IHSS, and medical benefits.

Rick: Government disability benefit rules prevent us from keeping and maintaining any appreciable savings for important purchases of goods and services or keeping and maintaining savings for emergencies. How can someone save for a new vehicle, adaptive modifications, a down payment on a home, durable medical equipment or items not covered by health insurance, vehicle repairs, property taxes, vacations, major household purchases such as a refrigerator, washer/dryer, other costly appliances, emergencies, and the list goes on.

Concerns about losing Medi-Cal prevent 33% of respondents from earning higher wages, 25% have fear of losing Medicare, and 22% fear losing IHSS with earning higher wages.

Pablo: I'm afraid of losing my secondary insurance from my pensioner. Medicare alone would bankrupt me in 2 months.

Gary: I'm worried about losing medical coverage because if I change jobs my conditions become uncoverable by the next insurance because they were previously existing conditions. I can not earn more because I can not look for something better.

Larry: Every time I would get a raise I was panicked that my IHSS would stop. If that stops, I can’t work. I do not earn enough to have a comfortable lifestyle and pay for an attendant.

Medi-Cal counts the income and resources of spouses in determining eligibility. This has kept 31% from marrying, or their spouse from earning a higher income. This question sparked more comments than any other.

Lois: In the past this has kept us from marrying. Then we decided to marry and just give up the SSI/Medi-Cal benefits.

Nanette: I have not married as my companion has a permanent disability; he would receive less money as I work.

June: I want to get married but put my engagement on hold because of losing my Medi-Cal if I do

Garry: I was not able to legally marry when I was on IHSS, because my partner’s income would be deemed as available to me.

Sarah: I would seriously consider these issues before beginning a relationship which might end in marriage.

Jorge: I’m engaged, and we probably will NOT be legally married because of income penalties

If I earn money my IHSS share of cost goes up.

Richard: If I would to get married I would lose my disability benefits and health care. My medications are $1,500 a month. This is a death sentence not being able to be married.

Paul: It has been a consideration in not getting married to my partner of 10 years.

Simon: It is an incentive not to have a partner. Any change in status compromises my benefits. Even relatives can be a threat.

Harry: While it is true that heterosexual couples are prevented from marrying by the catch 22 effect of many regulations in order to keep their necessary benefits, persons who are gay or lesbian are not blessed with the legal right and privilege to marry and in many cases are adversely impacted in terms of inheritance issues or are faced with negative estate transfer issues if their partner is disabled as a result of income and resource considerations when one person needs Medicaid covered services.

Darla: Yes, plus vice versa, people won’t want to marry me!

Health Insurance:

Health care coverage is a problem. Only 5% of individuals can pay for their own health insurance. Sixty-nine percent depend on Medi-Cal/Medicare, and employer sponsored plans cover only two thirds of the people who do work. Monthly premiums range up to over $400/month for 5%, with 10% paying between $100 and $300.

Rick: The Medi-Cal buy-in program is NOT and NEVER will be equality in health care benefits because few will accept it since reimbursements are so low. It is insurance for poor so is stigmatized and often rejected, and after age 55 Medicaid rules say that the state has the option to collect and recover dollar-for-dollar for all government subsidized medical assistance which includes personal care services under the Medicaid community-based in-home care services or personal assistant services programs as people with disabilities refer to it. This situation occurs even after working for twenty years, paying taxes, paying a Share-of-Cost for IHSS, or buying into Medicaid.

Insurance does not cover all needs. Among other needs, insurance does not cover: attendant care (16%), medical supplies (14%), durable medical equipment (15%), occupational, physical or speech therapy (11%), medications (20%), and mental health services (9%). Within their reported income levels, 50 respondents pay out of pocket monthly for health care needs. Another 10% go without prescribed care.

Ned: I have not used my Medi-Cal because of the share of cost.

Personal Assistance:

Forty-two percent need personal assistant services. Fifteen percent rely on IHSS, with over half of those paying a share of cost while an additional 15 % pay up to $900 a month entirely out of pocket. Another 15% rely on unpaid family while 5% go without.

Rick: However, federal rules affect my benefits when I retire because, as it now stands now, IHSS counts my retirement benefits as unearned income and kicks me off IHSS altogether and will tell me as a person with a significant disability to pay for my own ongoing extensive personal care expenses out-of-pocket leaving me likely with less funds to live on than those on SSI or SSDI income sources to pay living expenses.

This optional recovery can remove any legacy or equity that a working disabled person has built up and works to deny our very existence by denying us a future legacy to pass on to whomever we so choose. It penalizes and criminalizes disability from birth by artificially keeping people with disabilities who are poor or low-income making us owe a debt for living and needing some independent living government supports.

Paula: If I were not living at home with my parents I would require some in-home services which Medi-Cal would not cover

While at work 10% of respondents would need personal assistant care (e.g., eating, using the restroom, etc.) while 19% need clerical support (e.g., filing, writing, typing, etc.) and 5% need communication facilitation (e.g., speech translation, sign language, TTY, etc.). Transportation (e.g., taking a bus, riding in a car, etc.) is a concern for 19%, organizing job tasks (e.g., keeping focused on the job) for 11%, and general mobility (e.g., going through doors, going outside, etc.) for 8%.

Will: I do need some. I haven’t had anyone paid since I began work, but my daughter assists me in the mornings and when I get home from work.

California Working Disabled Program:

Only 22% of respondents have heard of the 250% California Working Disabled program. Only 13% found the information they received easy to understand. This program is not well understood.

Garvey: It seems that it is difficult to find people at SSI or even at Medi-Cal who know what it is or understands it. I just kept being told I would need to pay for my caregiver and I can’t afford that and still pay rent, food, bills.

Paul: Yes, county of Monterey claims there no such program.

Will: Currently in Solano County there is a major problem with HS&S offices understanding that Aged and Disabled and 250% Working Disabled are NOT the same programs, and 1619(b) doesn’t have anything to do with either one of the above mentioned programs.

I have now applied for the aged and disabled until I get the 1619(b) status cleared up. However when I spoke with one of the "Lead" workers at HS&S I was told that they discourage others from using 250% Working Disabled because of the high premiums and steer everyone towards Medi Care or Aged and disabled, or get this, Share of cost.

In the Medi-Cal programs a single individual may have assets up to $2,000 and $3,000 for a married couple. These limits negatively influence 44% in their ability or willingness to participate in the CWD program.

Paula: $2,000 is such a low number, I can’t imagine how I’m supposed to have anything of value in my possession. A TV, computer, a painting! Let alone a savings account or anything saved for retirement!

Rick: $2,000 seems cruel. I have had several vehicle repairs that exceeded $2,000 each. My retirement plan would be what? Work until I die? Why can’t IHSS and SSI recipient who have “risked employment” save for a new modified vehicle for example? My Kaiser plan just went to a 20% co-payment for durable medical equipment. My last wheelchair cost nearly $15,000. Allow a medical savings account/a long-term care account and allow people to save for retirement. If the state allows current IHSS recipients to keep their IHSS no matter what, what’s the loss? If the recipient doesn’t go to work, they stay on IHSS and do nothing to improve their economic well being. If the recipient goes to work, he pays taxes and adds to the tax-base, the economy, and his own quality of life. The veteran’s administration has a way to “keep paying” severely impaired folks and doesn’t penalize them if they chose to work. I’m talking about people who will require significant long-term care until they die. Finally, don’t penalize an individual or a couple because they chose community-based instead of institutional care. Even $86,000 is small potatoes when we’re talking about long-term care. Community care, like IHSS is a better deal for tax payers too.

Carol: Consumers of this agency all consider the resource limitation unfair. It generates a "why bother" attitude towards seeking employment.

Jane: Get me out of poverty. Not loose my medical due to resources restriction!

Carla: Si me afecta el no poder tenet más dinero o haberes porque esta cantidad es muy chica [yes it affects not to have more money or maybe it's because this amount is too small].

Holly: The asset limitation is unrealistic in today’s economy – especially in California. These limits make people almost homeless just to get a doctor.

Joan: We have 5 kids and a house I do not want to loose my place or belongings just to get a hand out even if it is my right. I do not like strict limits.

Fifty-seven percent also think that raising the income eligibility for the CWD program from $42,000 a year to $75,000 a year would make a difference for them.

Joan: As I get older I may earn more & it would complicate matters if I have to limit my career advancement for services.

Fred: I feel I could earn more than $45,000 a year. And I would have to earn more than $45,000 a year in replacement costs to compensate for the medical benefits I currently receive.

Rick: If I work, I can only keep savings of $2,000 in the bank (mostly likely not over $1,200 to insure direct deposits don’t push one off by a penny) to be eligible for Social Security 1619 (a) & (b) benefits & IHSS (IHSS most likely with a Share-of-Cost). Under the IHSS Residual program and Advance Pay, IHSS Share-of-Cost works to defeat income gains and means a social worker must examine my bank statements to see that I’m still eligible…

The CWG AB 925 QUESTIONNAIRE, Spring 2002

1. Are you currently working?

If so, what is your monthly income?

_____$1-$780

_____$781-$1,200

_____$1201-$2000

_____$2001-$3,400

_____$3,401-$6,000

_____$6,000 or more

Annual income? __________

2. Do you have health care coverage? And if so, what type? Check all that apply:

_____Individual

_____Medi-Cal

_____Medicare

_____Employer sponsored

_____COBRA

_____Other:

-What is your monthly premium payment for health care coverage? _______

3. If you have health care coverage, are there health care needs you have that the insurance does not cover? Please check all that apply:

_____Attendant care

_____Medical supplies

_____Catheter

_____Durable medical equipment

_____Ventilator

_____Occupational, physical or speech therapy

_____Medications

_____Mental health services.

____Other:

If you pay part or all of the cost for these services, how much of your own money do you pay for them per month, on average?________

4. Do you need Personal Assistant Services? If so, who pays for it?

5. If you personally pay for Personal Assistant Services, how many hours a month do you pay for?_______

And, how much of your own money do you pay each month?_______

6. While at work, would you need Personal Assistant Services care? And if so, please check all the services you may need.

_____Personal care (e.g., eating, using the restroom, etc.)

_____Clerical support (e.g., filing, writing, typing, etc.)

_____Communication facilitation (e.g., speech translation, sign

language, TTY, etc.)

_____Transportation (e.g., taking a bus, riding in a car, etc.)

_____Organizing job tasks (e.g., keeping focused on the job)

_____Moving around (e.g., going through doors, going outside, etc.)

_____Other:

7. What is your source for basic living expenses? Please check all that apply.

_____Employment

_____SSI

_____SSDI

_____Private long term disability insurance

_____Disability benefits from public employment

_____Other:

8. Are concerns about the following preventing you from earning higher

wages? Please check all that apply.

_____Losing Medi-Cal

_____Losing Medicare

_____Losing In Home Supportive Services

_____Other. Please specify:

9. Medi-Cal counts the income and resources of your spouse in determining your eligibility. Has this kept you from marrying, or kept you or your spouse from earning higher incomes? If so, please explain.

10. Before you received this questionnaire, had you heard of the 250% California Working Disabled program? If so, please answer the following questions.

How and where did you find the information? (Please be specific.)

-Was the information easy to understand?

-Was the information accurate?

-Was the information helpful?

-Did you apply for the program? If so, what happened?

-Have you experienced problems with the CWD program? If so please explain.

11. In the Medi-Cal programs a single individual may have assets up to $2,000 and $3,000 for a married couple. Would these limits influence your ability or willingness to participate in the CWD program? If so, please explain.

12. Would raising the income eligibility for the CWD program from $42,000 a year to $75,000 a year make a difference for you? If so, please explain.

13. What other problems do you face concerning employment and health care? (Please use the other of this piece of paper for more writing room if necessary.)

14. Individual stories often help our political representatives to understand the issues that people with disabilities have concerning employment. May we contact you to get a personal statement on your experience with work and health care? _____Yes _____No