21

When I was 21, as a woman without an Intellectual Disability (ID), I graduated from the University of New Mexico with a Liberal Art degree, married the man of my dreams, got a fancy job in marketing, bought a house and two new cars. I could drink at bars or home, I went on vacation, I bought amazing shoes, and and I moved about how ever I pleased. 21 was a banner year for me.

When my sister-in-law was 21, as a woman with an Intellectual Disability (ID), she exited high school with a “certificate of completion” and not a diploma. Her parents, though diligent about her care, had somehow missed putting her on the DD Waiver Waitlist until she was 20. So, when she exited high school, there was virtually nowhere for her to go. My in-laws own a farm near Los Lunas, so staying home kept her largely alone and isolated. A few days a week she traveled into Albuquerque with her parents to attend limited programs. She can’t drive because of epilepsy and the transportation in ABQ for people with disabilities is minimal and does not exist outside of the metro area. My in-laws owned a small auto shop and from time to time, when I would stop by to drop my car off for an oil change, I would see her bored and asleep in the lobby of the auto shop.

It took 6 years for her allocation to come up on the DD waiver. The entire family struggled. At one point, my in-laws self funded her to go to a special program in Roswell designed for adults with Intellectual Disabilities to get a certificate in a work discipline. Luckily for her, my in-laws put away education bonds when each of their children were born. They cashed them out and funded her to go. The program changed her life. She lived in a dorm with other disabled and non-disabled women. She has always been a fiery woman but her peers would not tolerate that so she put herself in anger management classes. She got her certificate in child care, despite many people saying no one would hire her because she wouldn’t be safe or able.

At 26, she got her waiver and was finally able to get her own apartment in Albuquerque and find the job of her dreams working at a child care facility. She has worked there for 12 years, never misses a day, and is an asset to her employer. Today she lives with her fiancé. They have friends, order pizzas, move about freely, and fight a little less with their parents.

I’m the generation that says: WE WANT MORE FOR OUR PEERS!

 

The New Mexico Developmental Disabilities Waiver is vital for improving the lives of adults with Intellectual/ Developmental Disabilities. Please contact your state representatives today and ask them to pass HB 107.

 

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House Bill 107 Medicaid Developmental Disabilities Waiver Supports and Services

On January 10. 2018, Representative Miguel P. Garcia, introduced House Bill 107. The bill asks the State of New Mexico to appropriate $25 million dollars specifically to the New Mexico Developmental Disabilities (DD) Waiver Waitlist. These waivers, in other states, are known as Katie Beckett Waivers or 1915 (c) Home and Community Based Services  (HCBS) Waivers. They are designed to “waive” the amount the parents make for a living, which may disqualify people from medicaid services and gives them a budget each year that includes community support, environmental modification to make their home safer, and much more, in addition to what regular medicaid has to offer.

In 2017, New Mexico’s DD waiver had only 4,696 people in waiver services, according to the New Mexico Developmental Disabilities Supports Division (DDSD). Meanwhile, the waitlist has mushroomed to over 6,400 individuals waiting for vital services such as home healthcare, job coaching, supported family living, and habilitation. Of the over 6,400 on the waitlist, 4, 176 are in what is called “start status” which means they have passed all preliminary requirements to qualify for the waiver and are simply awaiting an “allocation” and a final “medical determination of eligibility.” 4, 176 New Mexicans who are being solely supported by family, friends, and a bare bones Centennial Care program which has proven insufficient to support adults with Intellectual and Developmental Disabilities (I/DD).

Lets be very clear about the type of individual that will qualify for the DD waiver, before the “pull yourself up by the bootstraps” folks chime in. To qualify for this waiver, you must have either an IQ below 70 and significant inability to independently complete two activities of daily living such as feeding yourself or using the toilet. If you have an IQ above 70, then you must have three areas of significant impairment in “activities of daily living” (ADL’s). Finally, you, yourself, personally, cannot exceed a set amount which is essentially the poverty level. You cannot have stocks, bonds, own land, be gifted an inheritance and get the waiver. Some people can get around this by setting up ABLE accounts or Special Needs Trusts, but most have been living in abject poverty for their entire lives.

New Mexico receives about 3 dollars of federal money for every dollar our state puts towards healthcare so allotting $25 million to the DD Waiver Waitlist would amount to $100 million dollars and would allow each of those people in “start status” to begin to get services.

Local analyst and father, Robert Kegel calculated that, at the rate the state is allocating funds and taking people off of the waitlist, the last person on the end of the 2017 waitlist would be there for an additional 30 years. On this timeline, older people on the waitlist may not live to see services, perhaps due to lack of services.

New Mexico is in a surplus year, with oil and gas rebounding, now is the time to get serious about New Mexico’s most vulnerable population. Please contact your New Mexico Senators and Representatives and urge them to support HB 107.

4,172 New Mexicans are DYING for the DD Waiver.jpg

NM Disability Story Staff Travels to Hungary

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(Albuquerque)- On Saturday, August 26, 2017, Lisa Rossignol, MA, Albuquerque native and UNM graduate, traveled to the country of Hungary on a 14-day junket to train policy makers, providers, families, and individuals with disabilities about designing public policy and payment models that improve the lives of children with disabilities.

Sponsored by the U.S. Department of State, Bureau of Education and Cultural Affairs, Office of Citizen Exchanges, Professional Fellow Division, Rossignol was selected for her ten years as a disability policy historian and advocate. She maintains the public information website: http://www.nmdisabilitystory.org and provides disability consultation across the country.

“It is such an honor to be able to meet with this group of committed parents and professionals who believe that children with disabilities should have the right to go to school and live in the community,” Rossignol says. “This is an emerging democracy, in a very conservative region, but there is excitement about improving public policy for kids who have traditionally been left behind.”

In April 2017, Rossignol hosted a professional fellow, Eszter Dancsa from Hungary for four weeks. Dancsa, who works for a parent support organization in Budapest, was stunned by the sheer size of the state of New Mexico (nearly four times the size of Hungary with only a quarter of the population) and the complexity of disability policy—school, healthcare, transition, adult services, etc. She and Rossignol visited the Navajo Nation, and each of the four corner areas to explore the way disability policy has unfolded in each region. Rossignol and Dancsa, along with members of the U.S. State Department, will travel around the country of Hungary to provide training to families and providers and to meet with politicians and ambassadors. Rossignol hopes to build an internet based learning collaborative by using the Project ECHO platform to support future policy development between the United States and Hungary.

Town Hall Tomorrow!

This is a reminder that all the great minds in the New Mexico disability movement will be at the Southwest Conference on Disability tomorrow, October 8, at 11:30 pm in the Potter Room at Hotel Albuquerque. Please join us to construct a timeline of various disability events! You can view the flyer by clicking:  Townhall NM Disability Flyer

What we learned at the National Museum of American History

Katherine Ott, PhD, National Museum of American History

Katherine Ott, PhD, National Museum of American History

We had the pleasure of taking a tour with Katherine Ott, Phd, at the National Museum of American History this week. Although the collection did not contain much directly linked to New Mexico, it was a very interesting and helpful tour.  We did learn that the bronze, scaled sculpture replicating the polio virus was cast at the foundry in Santa Fe, New Mexico.

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Bronze, scaled replica of polio

Another thing we learned was that we were probably not correct when we reported earlier that New Mexico signed the very first White Cane Law in the country. It turns out that White Cane Laws date back to the 20’s and 30’s. I am not sure where our source got their information from but we are committed to deepening our research to find the truth. The trickiest part about collection history through oral histories is that facts are often experiential and require triangulation to find the closest to accurate information. In the digital age, and the rush to get new information out and keep readers engaged, sometimes we will provide inaccurate-though hopefully never dangerously inaccurate-information! Our commitment is to correct information as soon as we are able. Thank you for your patience and support!

Villa Solano

Roswell, New Mexico had a residential institution for adults Developmental Disabilities/Intellectual Disabilities from 1973-1976 called Villa Solano. Situated in the middle of a military airstrip, Villa Solano was a missile storage facility prior to receiving residents. It was fraught with staffing shortages and alleged abuse from the very start and was consequently closed and all residents moved into community based programs. 

Villa Solano situated in an air field.

Villa Solano situated in an air field.

September 1986

http://www.clearinghouse.net/chDocs/public/MR-NM-0002-0001.pdf

http://www.clearinghouse.net/chDocs/public/MR-NM-0002-0001.pdf

In September 1986, a lawsuit was filed against the Los Lunas Hospital and Training School from a building where two residents were murdered and one was raped. The lawsuit resulted in a three-day long, closed door trial that lead Judge Tibo Chavez to rule that the institution had not provided adequate safety for the residence. Judge Chavez, in his decision, ruled that outside medical examiners would have to see the residents to examine them for evidence of abuse and neglect. The judge did not allow any of the testimony to become public so there is no public record of the information shared by witnesses. The state appealed the decision and did not comply with the recommendations. I have been unable to locate anything that shows Judge Chavez’s orders were ever enforced. The institution closed in the mid 1990’s.