Please read this letter in full before responding
Dear VOR Members and Supporters,
We are reaching out to ask for your help. We want you to ask the Senate to improve on key provisions of the House version of the Build Back Better Act that affect our loved ones with intellectual and developmental disabilities.
Usually, these Action Alerts just ask you to click on a link and a pre-formatted letter goes out to your members of the House and Senate. This time, we are offering for you a choice. You may send a pre-formatted letter, or you may send a personal appeal The personal appeal will take more time and effort, but we believe it will be more effective.
Personalizing the letter will give your two Senators and your Member of the House a chance to see you, your loved one with I/DD, and to understand the negative effect that this bill may have on your family, if passed in the current form. Please include your name, your family member’s name, the name or town of the facility in which they live or work, or any specific details you are comfortable sharing. Please keep this introductory section short in order to address our three areas of concern about the BBB Act. We have found that brief, respectful, personal appeals are often the most effective.
Again, we would prefer that you take the time to write your own letter, highlighting the ways in which these provisions in the Build Back Better Act might affect your family.
Here are the three areas we would like you to focus on. You may comment any or all, however many would affect your family.
Section 30712 of the bill would provide a 6 percentage point increase over ten years for the amount the Federal Government will contribute to states for care of people in Home and Community Based Services (HCBS). We believe this increase, called the FMAP, should extend to all Medicaid programs, including ICFs, Farmsteads, Skilled Nursing Facilities, and Nursing Homes.
You might write something like:
"Our daughter Mary lives in an Intermediate Care Facility here in Tucson. She has received great care there for 35 years. It is her home, and she needs the care and the understanding of the caregiving staff, some of whom have known her for over fifteen years. The ICF is largely funded through Medicaid. The BBB Act would increase the federal funding of group homes here in Arizona, but not the FMAP for Mary’s ICF. That means the state would pay a smaller share of her costs, incentivizing legislators to close her facility. I don’t think she would do well in a group home. She needs a higher level of care than other people. Please fund all Medicaid services equally. Even though different people have different needs, everyone with intellectual and developmental disabilities deserves to benefit from this bill.
Section 30711 of the bill would increase wages and training for Direct Support Professionals (DSPs) in HCBS settings only. Private providers operating ICFs, nursing homes and other Medicaid-approved programs draw from the same pool of workers as HCBS facilities. Raising wages of only those working for HCBS settings will put the non-HCBS residences at a serious disadvantage for attracting and retaining workers, risking their closure due to an inability to fully staff their homes.
You might write something like:
“My sister Alice lives in an ICF here in Illinois. She is severely intellectually disabled, is non-verbal, and is at high risk for broken bones. She has not been able to take day trips to parks for nearly two years. Why not? Because there are not sufficient staff to accompany her and keep her safe. So, I know that individuals' unmet needs are in need of addressing in all settings, not just HCBS settings. I worry that if caregivers in group homes are given raises, but not the caregivers in Alice’s ICF, there will soon be no staff to attend to her needs. They will all take better paying jobs in the group homes."
Section 22201 of the bill offers grants to states to create programs to increase opportunities for people with I/DD who wish to participate in competitive employment. We object to the BBB Act requiring that any state receiving these grants must phase out or eliminate sheltered workshops and 14c wage certificates. We clearly recognize that not everyone with I/DD is a good candidate for competitive employment programs. Many of these individuals benefit from participating in supervised employment environments and the opportunity to work at their own pace, among their peers. There is no need to take away existing opportunities from some people with I/DD in order to create new opportunities for others. We ask that the requirement to eliminate 14c programs be taken out of these grants.
You might write something like:
My son Bob works in a sheltered workshop. Bob has autism. He has frequent seizures, a few each week, and occasionally acts out aggressively and needs to be monitored so he doesn’t hurt himself or others. He does not receive minimum wage, but that’s okay. He has no concept of the value of money. He sometimes has a candy bar at the end of a week, but mostly he saves up to buy a birthday gift for his sister every year. He likes to work. He loves the folks he works with, and the people who help him work and help him get through the day. Bob would not be a candidate for competitive employment. If his workshop were to close, he would probably be sent to a day program, where he would be with people more severely disabled and unable to do what he likes, which is work.
We understand that this is a lot to ask, but we are at a very crucial juncture. The BBB Act will either include our concerns or it will leave us behind. We hope you will take the time to reach out to your officials with your own personal letter, but that's up to you. We do ask that you choose one option or the other, and not send both.
If you choose to write your own personal letter, based on the suggestions outlined above, please click on the blue box below, then follow the steps below:
Personalize the title of the letter. In the box labeled "Subject", where it currently says Please support all people with I/DD in the Build Back Better Act,
Address the letter to your elected officials in the brackets below that (Your members of Congress will be listed right below the box in which you are typing) The first line of your letter will then read: Dear Senator ______ , Senator ______, and Representative _______,
Next, where it says, [Please insert your personal letter], add your personal information and the body of your letter addressing how these parts of the BBB Act might affect you, your family, and your loved one with I/DD. You can write the letter first offline, and copy and paste it into the box. Please remember to say "Thank you" and to sign the letter.
We ask that you then keep the sentence that shows the link to VOR’s letter to Congress, which we have provided. (The sentence begins "For more information on these matters...")
You're almost done! Please carefully review the letter you've written. Be sure to take out any brackets and instructions that don't belong.
- Scroll down to the bottom of the page, fill in your name, address, etc, and click "Submit" in the rectangular box. You're done!